To Ferry to the Other Side

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 in Heaven with Spices in St.-Jean-Pied-de-Port

Mom in heaven with spices in St.-Jean-Pied-de-Port, September 2011

* * *

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.  All but Julio DSC_0015

Words Seem to be Important to Me

Wednesday November 19, 2014

Today she is more exasperated than ever. Irritated to repeat herself, explain herself, or be asked any question. The non sequiturs are more frequent, and in fact have become the great majority of what she says. Petty worries. Simultaneously vocally unhappy with her pasta and upset that she has to risk hurting someone’s feelings by saying so.

The confusion often manifests as arbitrary and impossible commands, such as to add hamburger meat that we don’t have to a bowl of spaghetti that’s already before her. She tells Adam how to add salt and pepper to a meal.

* * *

“Where are all the boxes?” she asks, looking around her.

“What boxes?”

“The boxes that got all this stuff here.”

“You brought this stuff here over the last eleven years, Mom. This is the same little house you’ve always loved.”

“Is it still 512 North 3rd Street?”

“Yes, same address.”

* * *

I say aloud that today would be another good day to do some work at Starbucks. Mom is being helped off her portable commode. She says, “What I want you to do first is go through my cabinets. I don’t have . . . much life left.” A few minutes later she is sobbing and being comforted by hospice’s certified nurse’s assistant (CNA), Bonnie (not to be confused with Mom’s friend Bonnie).

After Bonnie the CNA has gone, Mom says, “She says it won’t be long anymore.”

“What won’t be long anymore?”

“This . . . thing.”

What the hell?  “Who told you that?” I gather she means Bonnie. I need to have a talk with her, or her bosses.

“We need to talk about some things. My funeral.” She puts her hands to her face and begins to sob. “This is so hard.”

* * *

She repeats some words from a poem that she wants read at the Irish wake (my words; she calls it a memories party) we will put on for her. I find the poem online and read it to her with a firm, measured cadence, so that she may feel the truth of it:

Do not stand at my grave and weep.
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.
— Mary Elizabeth Frye

“To save a wretch like me,” Mom adds.

“Amazing Grace,” I say.

“I did it my way,” she says.

“Elvis,” I say. “Are those the songs you want us to play?”

She nods.

* * *

Linda struggles to put marijuana salve on Mom’s bedsore. Her hands are cold and the touching probably hurts. Mom begins to cry. I go to her and comfort her and say I’m sorry.

“Oma took only eleven days,” Mom says. “She didn’t cause trouble for anybody.”

“Neither are you, Mom.”

* * *

She is crying. “I don’t know how to do this,” she says. I can still hear the pitch of her voice rising throughout her sentence.

I don’t say anything for a while. I think of saying nobody does, but I’m not convinced that’s true. I think of Zen masters and yogis I’ve read about.  There are people who train their minds for death, such as the Tibetan Buddhists whose text, Bardo Thodol, is called, by Westerners, the Tibetan Book of the Dead. Relying in part on training to cultivate lucid dreams and wake oneself up from them, the meditator who masters the Book’s techniques can remain conscious as she crosses the threshold into death, and can remain conscious after the body has died. And of course I have heard of regular people who feel they had a good life, enough life, and are ready to go.

I say to her, “Do you remember what you’ve always said about relationships? ‘Let go with love’?”

She nods. To my left Linda is already agreeing.

“I think that’s what you do. Love and forgive yourself, love your loved ones, try to feel love in place of fear.”

* * *

She hasn’t slept this morning at all. She is concerned about many things, and she is very weepy. Is this the “restlessness” the hospice books speak of, which means “days to hours” left?

* * *

She asks if I have any questions for her. She doesn’t want me not to know things. I say I will ask her if I think of any and she says something about running out of time. “There’s no big deal,” she says. “Even if it seemed like that when you were young. You have good DNA.”

* * *

I look up to see her gazing at me as she lies in her bed. I look back at her and smile. She continues to look at me very intently, and then she turns her head and starts to cry.

* * *

I am less weepy myself, and more – what’s the word? Numb? Detached? Accepting? It has occurred to me that I will feel much more sadness after her death simply as a by-product of thinking about the past more:  about things she did (and we did) and things she said. Nostalgia is just memories of what is no longer possible. That’s why the word in Greek means a return to pain rather than undiluted happy memories.

* * *

“What are your plans for the day?” she asks me.

“I’m going to stay right here with you,” I say. “I’m not leaving.”

* * *

She is concerned that the stained glass window has been removed from the living room. There was never such a window.

* * *

It’s nearly 5p.m. and she has slept very little today. One of the books hospice left a few weeks ago is called “When Death is Near: A Caregiver’s Guide”. It says in there that with “days to hours” to live, the patient becomes agitated, restless, and may have a burst of energy.

Is this that?

* * *

My mother is, in many ways, already gone, already lost to me. And I am stricken by her crying from sadness, or fear, or her broken-hearted disappointment. I fear that will stay with me palpably and for a long time.

* * *

I wake her up to take her medication. I ask her to turn over onto her other side. Then she is crying.

“What is it, Mom? Are you hurting?”

She nods.

“Where does it hurt?”

“All over,” she says, weeping. “It’s like it’s every cell.”

Oh, wow.

I show her where the bolus is and where its button is, and we press it. Two beeps, a pause, and then another beep. .20 ml of hydromorphone is injected into her port. We recently increased the hourly dose from .15 ml to .25 and she’s still hurting enough sometimes that we have to press the bolus one to three times in a short period of time. The cancer is on the move.

* * *

To be unable to think and express oneself clearly, and yet still be able to feel physical and even psychological pain. To be losing one’s mind but sentient enough to be aware of it and suffer. Hardly seems fair, does it?

* * *

A few moments later she spies the emerald-green couch next to her bed. “Who brought that couch in?” she asks.

* * *

And later, she is clearly exhausted and says something I can’t understand, followed by “and just get it over with”.

“That’s why you’re going to a better place, Mom. Because this is just miserable for you.”

“Do you have to leave tonight?” she asks.

I think my tone is at least as important as what I say. If I sound unworried, caring, protective, then the content that she may not understand anyway becomes less important. Now I say, “No, I’m staying here all night, with you. I’m going to sleep right over there on that other couch so I can keep an eye on you and make sure you don’t have too much pain.”

And she is satisfied.

Thursday  November 20, 2014

At about 3:50a.m. I hear her groan. I am sleeping on the couch with the bolus a foot away. Whenever I hear her in pain, I click the button she has forgotten how to even find. Now I give her a milligram of Ativan. She is fairly alert, even asks Adam to fetch her coffee, which he now makes like an expert.

During much of the discussion that follows, she is often crying or sad, but I will refrain from adding that fact to every thing she says. By the same token, I will also omit most of the times I had to ask her to repeat herself so that I could hear or understand her.

When she asks questions these days, she is utterly guileless, and trusting. She’s like a child. The things she asks about seem to me to be like a list of her anxieties and concerns.

“I can’t tell you how shocked I am,” she says, and this is when she begins crying. “I don’t want to be here.” And then: “I’m trying to hold on to my sanity.”

Not long afterward, she says she needs to call the dentist to get a replacement for the lower dentures that we seem to have lost. “He has it on file,” she says. She doesn’t like how the lack of dentures slurs her speech. As with her threats to return her crappy phone, this notion of having the time and need to have new dentures made betrays her fleeting moments of reflexive denial. It’s the life force in her.

* * *

She asks something about our life together. I mention that she was always loving to me.  For forty-seven and a half years.

She looks at me with amazement.

Really? You’re that old?”

I say I’ve been with her for over two years, in Montrose and in Telluride. Before that I was in Portland, Seattle, Bend, New Jersey.

“That’s quite a resume,” she says. She looks at me. “How did I luck out so much?”

I just want to turn everything around to be about her.  “You deserved it, Mom. You deserved every good thing that has happened to you.”

“You’re a good man,” she says, as if she were just learning it.

“You raised me,” I say. She smiles.

“Do we have cows?” she says.

* * *

She looks to her left and sees Adam. “What are you doing here, Adam?”

“I came here to visit you,” Adam says gently. “And Cameron. But mostly because marijuana is legal in Colorado.”

* * *

She stirs. “Is there an inheritance story behind this?”

“Yes,” I say, though there isn’t yet. “It’s a good story.”

“Is there a headline?”

A what? Sure. “Yes.”

She leans back. “A blessing,” she says. “Health, a little money. Love.”

* * *

At times she sounds like Samuel Beckett.

“We’re not the worst, are we?”

“No, we’re not the worst.”

“I mean, our standards is good, right?”

“They are very good.”

* * *

“I think it’s a memory recovery that I need,” she says. Still holding on.

* * *

“I want to know everything.”

* * *

Mom, Adam, Cameron

Mom, Adam, Cameron

* * *

And later, when she sees me sitting to her right: “Where’s Cameron?”

“Cameron’s right there,” Adam says.  Adam and I exchange looks.

* * *

“I keep missing people. I don’t know why I keep missing people. And my brother just died, right?” She cries.

“Yes,” Adam says. “Horst died a few months ago.”

She looks at me. “You were everybody’s Swiss darling.” I’m not sure what this means. And to Adam: “You’re my best coffee warrior.”

* * *

She comes out of another reverie to ask, “Do I have to have assistance in dressing?” As if she were trying to be briefed on her own life.

“Do you want assistance, Inge?” Adam says.

“No, I want to know if I can dress myself.  Am I able to.”

“I think a little assistance is helpful,” Adam says, rather than saying “no”.

* * *

“Do you want to sleep?” I ask her. It’s the middle of the night. I sure do.

“I don’t want to sleep,” she says. “Bits of my life are falling away. If I have one.”

* * *

“Do other people have beds like this?”

“No, Mom, you have a Swiss Army knife of a bed. The nicest in town. It’s like a smartphone.”

“I don’t know how to use that,” she says. “I’m a geriatric idiot.”

“No,” I say, “you’ve never been an idiot. You’ve always been quite clever.” Adam seconds the motion.

* * *

“What’s the situation?” she asks me. “How did you react? I mean, did I fall?”

“No, you didn’t fall. Your cancer has just been spreading.”

“Do we have a lot of good steady friends, too?”

“Yes, very steady,” I say.

“A lot of friends,” Adam says.

She cries. “That’s good to have,” she says, wiping her eyes.

“It’s great to have,” Adam says.

“We can raise a barn,” Mom says.

“Yes, we can raise a barn,” he says.

“But I can’t walk.”

* * *

She opens her eyes, looks at me.

“You’re a great mom,” I say.

“Am I a great other things, too?”

“Sure you are. A great cook—“

“A great friend,” Adam says.

“A great walker,” I say.

* * *

It’s about 4:30 a.m. Adam leaves for the airport shortly, so he’s packing quietly as Mom talks.

* * *

She says she’s very fastidious and so wants an easier way to go pee on her own, without calling to anyone else first. I can’t gather what she is saying, but she seems to be designing some kind of contraption. I tell her that’s not necessary.

“I’m almost always here, so you just have to ask me for help.”

She brightens a bit. “Are you a gentle person?”

“Yes,” I say. “Why?”

“Because I’ve had it so rough.”

* * *

Out of nowhere, I hear her breaking the silence in the room to say, “Do we have a father?”

* * *

Sometime after saying something, she stirs. “Is that a true thought?”

“Yes,” I say. I can see that she’s upset about her cognitive deficits. “You have many true thoughts.”

She reaches for my hand. “My soul seems to want to find you.”

* * *

Before I can ask her about this, there’s a knock at the door. It’s Bonnie, come to take Adam to the airport. Mom cries as Bonnie hugs her. “I’m having a snot or identity crisis,” Mom says. “One or the other.” Later she looks at Bonnie. “I can’t remember you.”

“I’m Bonnie,” says Bonnie.

* * *

Gesturing in my direction, she says to Bonnie, “I didn’t know what to call him for a while there.”

“You can just start with ‘son’,” Bonnie says.

Mom’s eyebrows go up. “I wasn’t sure,” she says, almost conspiratorially.

* * *

Silke arrives at about 10:30a.m. I had been trying to go back to sleep, thinking it was earlier, but I get up. Mom tells Silke that she hadn’t known who I was. “I thought, That’s a handsome man there.” A little later my mother says to me, “I sure hope I like you.”

* * *

And then one of those exchanges that I will carry with me.

“I just feel like bits and pieces,” she says, sounding so sad. “Are they ever going to come back together?”

“Yes, Mom. They will come back together. And you’ll be much happier.”

“Soon?”

Sigh. “Yes, soon.”

* * *

She has been sitting in bed with her eyes closed. She stirs. “I was thinking, that as soon as I get back on my feet” — Silke and I look at each other — “maybe out of pride, I can make a walkway, an elegant one, so I can get around the house.” She points at the walls and draws an imaginary railing or something. “Because people do challenges,” she says, as if answering an objection.

Mom and I have both moved into new stages. She can no longer walk or support her weight. Getting into and out of bed is slow and painful. Moving four feet to the portable commode can exhaust her to the point of nausea. Until ten or so days ago, she only got nauseated during the relatively much longer and more arduous trek to the bathroom. She sleeps most of the time. And perhaps most distressingly, she is disoriented, confused, and very sad.

I began in an agitated state of fear and sadness and desperation. But three and a half weeks on, I seem to have settled in. It’s grueling, my conditioned mind offered up the other day. No, not grueling, I think, It’s not that bad. I exist at a surely temporary equilibrium. Even the morning depression seems to have lifted. I suspect I am able to maintain this balance only because it is too soon, perhaps even impossible, to feel what I will later come to feel I have lost. Too soon for the bittersweet memories of a bygone era. Too soon for any regrets. Even too soon for the sadness I fear I will always feel about my mother’s weeks-long psychological distress.

When her cognition was still in place, my mother expressed a pained dumbfoundment about her situation. “How did I get here?” Now that her reality comes and goes as fluidly as a dream, when she says “How did I get here?”, she literally doesn’t know where she is. The anxiety about her sudden illness has changed to a more metaphysical anxiety about place and existence.

* * *

Hospice nurse Suzanne is late to a meeting that includes the hospice-provided social worker. I can feel people gradually becoming more concerned about me. Adam suggested that I hire outside help. Mom’s friends say, “How are you holding up?” I don’t know. I don’t know what to compare it to. I catch the end of Mom complainingto the social worker about losing her mind, when she says, “Is it Alzheimer’s? Do I have Alzheimer’s?”

“No, honey, you don’t have Alzheimer’s,” the woman says. “It’s just the progression of the disease. The cancer causes the organs to shut down, and the brain is another organ, so it’s going to be affected too.”

“It’s normal, Mom,” I say. I know what she needs to hear.

“It is?”

“Totally normal. There’s nothing wrong or bad about it.”

She seems relieved.

* * *

Suzanne and the social worker have come to tell me what to expect, and they ask me if I’m comfortable taking my mother to the bathroom and cleaning her up if she’s incontinent. I have a simpler answer: “I’m pretty sure my mother wouldn’t be comfortable with that.” Adam, Suzanne, and the social worker suggest that I hire someone – Adam has even offered to pay – to help me. But I can’t figure out, and no one, not even the home care expert Suzanne recommended, can explain to me how I could use such a person. I don’t need or want someone here all the time, or even predictable periods of time, and what I would want – someone on call when something less predictable happens – is not what they offer.

* * *

I talk to her of the afterlife. As to heaven or an afterlife, I am agnostic – I don’t have particular beliefs, nor do I reflexively (like an atheist) disbelieve. (I do disbelieve hell). But I set all this aside now and paint a picture from the near-death experiences I know Mom is familiar with. The social worker who has come to talk to me helps.

I tell her something like, You will always be connected to me, Mom. You won’t miss me because you’ll always be able to be with me. But I will miss you because my soul is going to be stuck in this falling-apart body a while longer. You are moving on to the next Camino. The next stage.

“But all alone,” she says, mournfully.

You won’t be alone. You’ll be able to be with Candy all the time, and Brianna, and Carrie and Jannilyn and Gregory and Annika – but also Oma and Uncle Horst. You can travel wherever you want to go, just like you always wanted to do, and feel the presence of everyone you want to.

* * *

I am explaining to Monika that we were up at about ten to 4 in the morning, and that Bonnie came at about 4:30 to take Adam to the airport. Mom takes this in. “Boy,” she says, “we’re busier than a whorehouse.”

* * *

She says she’s going to bed. It’s a little after six. For the next four hours I surf Facebook, the web, my emails, and my journal.

True History of the Camino de Santiago

Mom’s new favorite book, featuring Mom, Carrie, and Julio, by Cameron Powell

Love and Confusion

Sunday November 16, 2014

Last night at around midnight she called to go to the bathroom. Adam heard her first and when I walked out she was already on her commode. “Let’s give her some privacy,” Adam said, and we walked into the kitchen. There we began a lengthy vigil. She was bent over her knees and she sounded like she was in pain. We’d pop our heads out to ask if she was done yet, if she was all right, if she needed help, and she’d wave us off.

I helped her back to bed and sat on it next to her. She put my hand against her cheek and closed her eyes.

* * *

In the morning she still has some confusion but is feisty. Adam is up early with her and gets her coffee, canned (!) peaches, tea, bone broth, and a quarter of a slice of toast. He gives her the Ativan on schedule. Muschi calls and I give the phone to Mom.

“I can’t believe this is how it ends,” she says, “after stealing potatoes and pears.” She’s referring to their poverty and starvation in late 1940s West Germany. She’s crying. Then she switches to Bavarian and I can’t really follow. When Mom gives the phone back to me, Muschi’s voice is changed.

* * *

Berle, Peggie, and Peggie’s husband Pat stop by. “We’re bringing church to you, Inge,” Peggie says. “Because church is wherever we are. We’re going to do communion, and I don’t care if I’m not a priest. This is our own communion. I don’t need somebody between me and God.” She and Pat and Berle read from Isaiah, John, and Psalms. They say prayers for my mother, and for me. Peggie finds some of her favorite praise songs on Pat’s phone and plays them for Mom. She weeps and tries not to let Mom see.

Adam and I leave the house to pick up some pizza that Mom has suddenly begun craving. When we return she tells me, referring to Peggie and Berle, “They tied me down and made me listen to stupid foreign jokes.” The women laughed at that. “Inge, you are still so funny,” Peggie says. Mom doesn’t eat more than a bite or two.

* * *

At half past noon it’s time to pick up Mieshelle. Adam offers to go with me, and at the airport he walks inside to find her.

“It’s been a long time!” she says, as we hug on the sidewalk by the car. “How are you doing? Nevermind,” she adds, “I know how you’re doing. I read your blog.” She is still beautiful, hasn’t seemed to age, and she’s very smartly dressed.

It has been about three and a half years since we last saw one another. I reminded her that we’d been in the Barnes & Noble in Bend, Oregon, negotiating our settlement agreement.

At the house she goes to Mom and hugs her. It seems they are crying. Berle, Pat, and Peggie take their leave, hugs all around. Mieshelle chats amiably with my mother. She has brought a wave of positivity into the house. I am happy to see someone, anyone, here to love my mother, but I also feel, I suppose, something related to reconciliation. They’d fallen out of touch during the divorce, though in recent years they have corresponded on Facebook. I know my mother is important to Mieshelle, and I know my mother has tender feelings and compassion for Mieshelle. I feel good that she is here, and I am relieved.

I listen in and watch them talk for a while, and then I think it would be good to let Mom sleep and let Mieshelle be alone with her. I explain to her the workings of Mom’s world – the pain pump and Ativan, her need to be on her side, her water bottle and vaporizer pen, the bed control and the marijuana salve – and Adam and I jump in Mom’s car to go to Montrose’s newly remodeled Starbucks. “Well that was sweet,” I say. “I’m glad she’s here to love my mother.”

* * *

There is a dividing line between our parents as mortals who yet breathe and our parents as legends that grow as time winds on. I have a feeling I will talk about my mother even more once she is gone.

* * *

She ate some plain yogurt earlier this evening. Several spoonsful. Spilled a good bit on her pajamas and chest, and then made it really clear she didn’t want any help with all that. Mieshelle managed to clean it up anyway, and to put a paper towel on Mom’s chest. Adam and I went to Starbucks to work and catch up on correspondence while Mieshelle gamely made entries into our log for the Ativan and pain pumps she was giving Mom. She’s a positive influence on the household. Adam and I tend to keep to ourselves, in quiet pursuits. Mieshelle, by contrast, is in full charm mode.

Adam went to bed early. Mieshelle and I watch a movie, then begin a second. She is cold so I get her the heavy Afghan blanket and drape it over her. She falls asleep and now both my ex-wife and my mother, separated by a few feet, are asleep before me. It’s an odd sensation. This is the person I shared part of a life with, have memories of traveling and parenting with, then fought and resented – and she’s right here, as if none of the unhappy stuff happened.

Monday November 17, 2014

The days wear on. Today marks three weeks since I sped from Telluride to Montrose, afraid my mother was about to die. Mieshelle and Adam are up before me, though their military maneuvers in the kitchen wake me up before I’m ready. Adam comes in to tell me my mother is alert if I want to spend some time with her.

She is concerned about what happens to some of her things. There are certain items that she wants to stay in the family. She has me take a picture down from the wall and look for the name written on the back. There is no name. She tells me to write “Inherited from Ingeborg Amanda Cheatham” on it.

“Who do you want to give it to?” I ask.

“You!” she says. She looks up at the shelves to her left. “If Oma’s Madonna doesn’t stay in the family,” she says, “you’ll all be cursed.” She looks at another figurine below it. “That black Madonna,” she murmurs, “pretty much the same.” Adam laughs at this. “Giving away, losing, stealing, nothing bad should happen to those Madonnas.”

She points to the armoire housing the TV in front of her. It’s neither an antique nor particularly attractive. “My son hates that, but I like it.” She starts crying as she mentions an aunt of hers who had a similar armoire “that stood there right when you walked in,” and concludes, wiping her eyes, “That’s why I can’t die. I’m too attached.”

* * *

When we ask her to turn over on her side to get off her bedsore, she asks, innocently, “Which way?”

* * *

Tanya, my sister’s best friend, writes me a long text of encouragement and love. I get a Facebook IM from one Karin van Deyk, who writes:

Hi Cameron,

I don´t know you personally, I am a Facebook Friend of your mother – I’ve never met her, but she touched me very deeply – we often talked about cancer – I myself had breast Cancer 13 years ago, so we had something in Common and we shared hope, Inge is that kind of woman I always wanted to be – always open minded, always kind and helping others – even her words always are kind.

* * *

I am reading and answering emails. She lifts her head from dozing and says, “We don’t have a dog, do we?”

* * *

Mieshelle is washing dishes in the kitchen. I find her presence surprisingly comforting, and I feel myself not wanting her to leave so soon.

* * *

“They say there will be four more days of this,” she says to me.

“Four more days of what, Mom?”

“Of this. Illness.”

“Who told you that?” The hospice assistant who was just here?

She waves her hand vaguely. “Somebody.”

“Nobody has said it will last four days, Mom.”

* * *

Sometimes she says things that are somewhere between an attempt at a joke and a slippery grip on reality. A cat with shiny pajamas – who turns out to be Adam in his silk robe — promised her a bon-bon. The cat also told her to take oolong tea into the garden, where waterfalls sing.

I watch her as she falls asleep. I notice that I’m numb to the enormity of her imminent non-existence. I kiss her forehead and smell her hair and skin, and then some tears come.

I am mostly numb from this waiting game. I did struggle not to cry at the funeral home. The woman handed me the cremation contract and I found myself shaking from the war between the impulse to cry and my efforts to hold it in. I was surprised to find Adam teary as well.

* * *

I told Mieshelle I was glad she came out here and it’s been nice to have her here. She agreed. It’s both strange and very familiar. I’m glad this happened.

* * *

We increased Mom’s basal dose from .15ml per hour to .25. The hospice nurse said Mom  would probably sleep more, though it’s hard to imagine how she could sleep more than she has been. On the other hand, she seems to be dozing less and really sleeping more.
Mieshelle leaves tomorrow and Adam leaves on Thursday. Linda will come tomorrow for a short time. I like not being alone. I like visitors coming here.

I am grateful for Adam’s three-week stay. He’s been invaluable in the kitchen and at night, and has helped me with hosting when people visit. On their way out, he thanks them for coming. I’m grateful that Mieshelle’s visit turned out so well. She’s been great with Mom, pleasant with Adam and everyone else, and I’ve felt a sweet affection for her.

I’m grateful for Berle and Silke and Peggie, for Karla and Monika and Inge, for Jayne and Will Kay and Lynn, for Gregory and Annika, for all the people who comment on Facebook.

Tuesday  November 18, 2014

Mom does seem to have been sleeping a lot since her base dose of the painkiller was increased. This is a mixed blessing. She may be in less pain in spite of being unable to remember how to use her bolus to deliver painkiller, but she is not conscious to us. Her ability to perform that most basic of human tasks, that of being present, has been taken away from her, and from those who love her.

I have been grieving this for some time, but I can also tell that I’m just a bit numbed by it all. How else to explain that I’m reacting as if my mother not being present, and dying, is just the way things are. This is what I mean by having settled into a rhythm. There is nothing else to do when you’re waiting.

* * *

Carrie and Laurel arrive from Grand Junction. Carrie has impulsively moved to Nebraska and is back in the area for a few weeks.

“That’s where Mom and Muschi got their start,” I say. “One of the first places they lived in the early 1960s was Omaha.”

“Don’t tell them that!” Mom says, coming to life. “That shows them how stupid I can be.”

“What’s stupid about that?” Mieshelle asks.

“That really changed my life,” Mom says.

* * *

“Is that your ring? Let me see it.” Laurel was married recently.

Laurel shows her the ring.

“Tell him you lost it,” Mom murmurs, “and to buy you a bigger one.”

* * *

 

Mieshelle and I talked quite a bit this morning. I hung out at the bathroom door while she

Mom Applies Lipstick

Mom Applies Lipstick

 

put on makeup. I thought of telling her that I missed having a connection with her, but I didn’t see the right opportunity and figured I’d do it at the airport. In the living room, Mieshelle wanted pictures of herself with Mom and of herself, Adam, and I with Mom. She applied makeup and lipstick to Mom. Mom wanted to put a different lipstick on, and to put it on herself. “It’s a girl thing,” she said. She looked at herself in the smartphone Mieshelle was holding out for her. Mom took the phone.2014-11-19 08.35.59

“My God,” she said. “ Who is that person?”

Before she left, Mieshelle went to hug Mom. Mieshelle was crying a little.2014-11-19 00.25.52

“It’s not over,” Mom said.

I couldn’t see Mom’s face, but as Mieshelle continued to say goodbye Mom said, as she had with Muschi, “Just go.”

* * *

Mieshelle and I got in Mom’s car and drove toward the airport. On the way there, I said to her, “It was really comforting and healing to have you around.”

“Oh, really?” she said. “That’s so nice. I’m glad.”

“I think I re-remembered how much it hurt me not to have any kind of relationship with you, and I feel like I want to keep some connection.”

“I feel the same way,” she said.

I ordered some chai latte that was light on the real chai and had no latte. To be candid, it was the worst chai that has ever been made on this planet in the history of humankind. We sat and talked for a bit and then we hugged in front of the security ropes. I kissed her on the cheek.

“I’m serious,” she said. “If you want to talk to anyone, you just have to say so.”

As I drove out, I felt the bittersweetness of spending positive, caring, affectionate time with her, and feeling supported in my journey with my mom, as well as sadness about the losses we both endured when we split up.

* * *

Carrie was asked what were the best things about the Camino for her. She thought for a second. “Inge, of course,” she said. “That woman has just inspired me so much.” Her eyes were red. At one point I saw her and Mom both gazing into each other’s eyes, and caressing each other’s faces.2014-11-18 11.28.37

 

 

 

 

 

2014-11-18 11.35.23I do some work and then come out to kiss her head and stroke her hair. “My cousin!” she says, maybe trying to make a joke. “My son,” she says more softly. She pulls me down into a hug.

I see her smile again. “You’re really smiling a lot more these days,” I say.

She begins to cry.

“What? What is it?”

She waves her hand in front of her mouth as if to dissipate the tears from her tight throat. At length she says, “I have such good friends.”

“Awww, of course you do. And you have friends who live in other places and have never met you who would love to be here with you. All kinds of people on Facebook saying Inge has been an inspiration to me and Inge helped me immensely when I lost my parent or was diagnosed and I always loved Inge for her posts with beautiful photos of nature first thing in the morning.”

“When you haven’t been worth anything,” she says quietly, “it’s really hard to believe.”

“Believe it, Mom. This is who you really are. It’s your old way of thinking of yourself versus how everyone else does. And you know they’re the ones who are right, don’t you?”

I tell her she’s so loved.

“It’s weird,” she says. “It feels fake.”

* * *

“This nice gentleman comes in every morning and says, ‘Coffee or tea, madam?’” She explains this to Linda, just arrived. She is probably talking about Adam, but I can’t be sure. Linda has called to check on my mother every day since her visit a week ago.

“Love you, Mom.”

She begins to cry.

“What’s wrong, Mom?”

“I just love you so much.”

Not Getting Better

Thursday November 13, 2014

Adam comes to my room to let me know my mother is pretty alert, so I get up and go to her. After we have been talking for a while, she says, “I need something that’s going to give me hope. I manufacture it at night. There’s not any left, and I’m not getting better. Can somebody tell me something that will give me hope?” I just listen. It’s really hard not to offer her comfort when she cries, and when she’s so clearly in despair.

She wants to call her cousin Renate, who has been like a close sister to my mother. “I’d never forgive myself if I didn’t at least try,” she said, tearfully. So I call Mom’s sister, Christa, to get a number for Renate’s hospice.

“Tell her things are going fine here,” Mom says, “so she’s not so freaked out.” I think, I can’t tell her that. “Tell her I have a cough so I can’t talk,” Mom says. But Christa doesn’t answer so I leave a message. She calls back moments later, and after I ask her if she has Renate’s phone number, she explains that it’s not possible to call Renate, who is not doing very well at all. Mom can hear Christa’s voice coming out of the phone and begins to cry.

“This wasn’t supposed to happen like this,” Mom says. “We were going to end up in Iziba” – she means Ibiza, a Spanish resort island – “on the Strand, to make up for the crappy life we had before.”

At this she weeps again. I look at her, thinking this has been my worst fear, that she might die without having felt she lived a good life. A few months ago, when I first expressed that fear to her, she assured me that since her recovery from ovarian cancer in 2001, she has been “content, very content.” Now I’m not sure I can be comforted by that anymore.

“I can’t believe she’s going to leave without saying goodbye,” Mom says.

* * *

“I don’t like that phone,” she says, “I need to take it back.” She’s said this about her brand-new Samsung Galaxy S a few times in recent days, another clear sign that she thinks she’ll live long enough for it to matter.

I want to spare her the psychological pain of accepting that she is dying. The rallying cry of the codependent. But I’ve always struggled with those boundaries – how much must I suffer in order that my mother not suffer? Here, there is nothing I can do. This journey toward acceptance and peace is her last camino, and the prizes the greatest she’ll have ever won.

* * *

I wondered yesterday if I wouldn’t be hearing from my sister about a return visit.

* * *

The hospice chaplain comes at one o’clock. He’d called earlier to see if it was okay, and I’d said yes without asking Mom. I hoped he’d engage her in a conversation about the end, and he did gamely try to do so. At his invitation, she begins to recount things that give her joy – the clouds in the sky with their shapes – and then she cries. It’s about Renate, who might die today, she says.

The chaplain later tells me that he tried to engage her in an end-of-life discussion, “but she wasn’t going there.”

* * *

The rest of the afternoon and evening passed without much incident. Silke visited and rubbed Mom’s feet. Mom was asleep most of the time, but she did break down and cry to Silke about something I wasn’t privy to. She cried more than once today. Sometimes she’d say she was sad about Renate, and sometimes she wouldn’t say or I wouldn’t ask, and I’d wonder if she was crying because she knew or feared she was going to die.

I can see the immense comfort of a belief in life after death. All this fear, transformed, in small or large part, into hope for a beautiful adventure of some kind. I don’t know what Mom’s views on the matter are, exactly, though I have my speculations. I haven’t asked her about her views of life after death because I may as well ask if she knows we think she’s dying. It’s premature, and would only distress her.

* * *

She looks at the furniture in front of her – the dining room table, the shelving, the TV cabinet – as if seeing it for the first time. “How did all of this get in here?” she asks.

“You brought all this in here, Mom. It’s all in your house.”

“Is it in the same location?” she murmurs, though it takes me a while to understand her.

“Yes,” Adam says. “It’s the same location.”

Friday November 14, 2014

Adam got up at around 2a.m., and I went to bed about a half an hour later. In the middle, I helped Mom into the bathroom and back and Adam helped me tuck her in.

In the morning I go to her as soon as I come out of my room. “I almost went crap outside the bowl,” she says. I move her portable commode out of the bathroom and closer to her hospital bed.

* * *

I hear Mom talking to the hospice assistant. She is saying something about not being at home. The hospice assistant tells my mother that she is, in fact, at home. The next time I check on Mom, the assistant is making up her bed and Mom is sitting on her portable commode with her legs covered. She moans a few times and the hospice assistant tells me Mom is complaining of bladder pain.

“I’m so sad,” she says.

“What are you sad about, Mom?”

“Renate,” she says. “This.” Here she gestures toward her condition. “I just wish I knew,” she says. In her much-reduced voice there is overwhelming sadness.

“You wish you knew about Renate?”

She nods. “I just want to be able to say goodbye. Say thank you.”

“She knows you’re thankful, Mom.”

“I know,” she says. Irritably. “It’s not about her.”

* * *

“When is Candy coming?” she asks.

“I’m not sure,” I say. Candy had texted me yesterday to check in, but hadn’t answered my question about whether she wanted to come back.

About ten minutes later, she says, “Did Candy call?”

“She texted me a little while ago,” I say. “She’s still seeing if she can get permission to leave.” I do not know this to be true.

Mom tears up. “I don’t want her to have problems. She doesn’t have to prove her love. I remember what it was like being a single mom.”

* * *

“There’s gotta be something I’m worth it to eat,” Mom says, or something like that.

Worth?  “You’re worth plenty, Mom.”

“I just haven’t eaten in five days,” she says.

* * *

Other times, what she says doesn’t make much sense. And five minutes ago, she gestured toward “the golden thing on the table”. For some reason she had me fetch the small sculpture so that she could examine it.

* * *

“How long have we been here, in this house together?”

“You’ve been here eleven years.”

“I mean this time.”

“About two and a half weeks.”

Her eyebrows go up. She whispers. “That long?”

“Yes.”

She gazes off to her right for a while. “Was I in a coma?” she asks.

* * *

She reaches for my hand. I’m sitting on the couch, but I get down on the floor next to her bed and take her hand. “Hands across time,” she intones. “Your hands were so fat and cute.”

“You’re my favorite,” I tell her.

She smiles. I turn her hand over and lift it up to my lips. I tell her I need to get on one of the business calls I’m somehow able to keep doing. I remind her where to find the bolus of the medication pump. She grips it in her hand and raises it to her mouth, as if it’s her glass pipe.

* * *

I am leaning down to press my face against hers. I breathe in her soft grey and white hair. In her small, girlish, trusting voice, she says, “Am I getting any better?”

“Are you what?” I say, not sure I’ve heard her, or maybe I’m just terrified of where it’s going.

“Am I getting better?”

Breathe.

“No, Mom,” I say.  “I don’t think it’s getting better.”

Her eyes fill with tears and her face is a mirror of pain. She puts her hands over her face and begins to shake with weeping. She begins to keen. I am beside myself.

“I wish someone could tell me something,” she says.

“Do you want to see a doctor?”

“No, because then I would know for sure,” she says. “We don’t know what it is.”

“We know the cancer is spreading, Mom. We know there are certain signs, like the fact that you can’t eat, or your confusion.”

She cries again, ripping the flesh of my heart. Is this not just the worst conversation I have ever had?

After a while she says, “I think I knew a while ago. You just have a feeling about your own body.”

“You mean when you felt something was different, in the last few weeks, and months?”

She nods.

“You did everything right,” I say. “You have been a true warrior in every sense. And you touched and inspired so many people.”

“They used to say that when I was five,” she says.

“Say what, Mom?”

“Say I inspired them. I never understood it.”

“We’ll always be connected, Mom.”

“I know,” she says.

* * *

“I don’t know how I’m going to live without you,” she says, and she begins to shake again.
A little later, she asks her friend Inge, who is older than Mom, “When you die too are you going to come find me?”

* * *

“Am I getting better?” I don’t see myself forgetting that. In that small, pitiful voice. And how vulnerably she simply accepted my answer, like a child.

For a man whose mommy issues revolve around his desire for her to be happy, there is no test like breaking the news that there is no hope, that she is dying.

* * *

Adam and I come back from almost two hours at the local Starbucks, where I distracted myself from the heart-ripping conversation I just had with my mother. Inge and Monika have been watching over Mom in our absence, and they hug us and leave soon after. I sit down on the couch next to Mom’s hospital bed.

“Gregory knows,” she says, referring to the boy she nannied for years, and who loves her like a grandmother.

“Knows what, Mom?”

“That I’m dying,” she says.

Ah.

That’s the first time she’s said those words.

* * *

I don’t think I’ve had any experience more alien than looking at my mother, watching her sleep, hearing her breathe – and trying to grapple with the reality that in a very short while, she will no longer be lying there, no longer be in this house. Knowing that there’s nothing I can do about it – a few more days like this, maybe a week, and she won’t even be sleeping quietly in a hospital bed. She will cease to exist! How to wrap one’s head around that? I’m anxious about being in this house with nothing but memories, ghosts, of her. This is her house. She fixed it up and filled it up with memories and I can’t imagine her not alive in it. I worry about how alone I will feel. I’ve had one parent all my life; what will I do with her gone? When cooking or food comes up, I’ll think of her, want to share, and remember with a start that I can’t call her up any time I want. She once told me she experienced this when she thought of calling up Oma. When I travel, I’ll think of how much she would have liked to come. When I see nature, I’ll remember her appreciation and wonder, and her gratitude.

There will be a mom-sized hole in the world, and I can’t even begin to imagine all the ways my life will be different because of it.

* * *

Berle writes me a lengthy text full of the usual love and generosity.  In part of it, she explains that my mother recently translated the German book Perlen des Lebens for her and Peggie.  The way your Mom translated that book is a cherished memory Peggie and I will never forget. It was as though she could feel God’s presence while reading it to us which brought about some wonderful, emotional conversations. Your mom has been blessed in many ways, but mostly by having you.

At the end she writes, She is always in my thoughts and prayers and I know there’s a fabulous kitchen awaiting her in heaven.

* * *

It’s around 8 o’clock and Mom is dozing in and out, mostly out. The medication pump keeps beeping, annoying both of us. While I put in a new battery I hear her talking in her sleep. I can’t make out what she’s saying. A minute later she spots my vaporizer with one eye opened about twenty percent and the other ten, and she asks for something.

“You want what?”

“Weed!” she bellows.

I clean out the charred material in the bowl of the glass pipe and add some fresh indica. I hold the lighter over the bowl and she inhales. And once more. And without further ado she says, “Good night, my beloved son” and closes her eyes.

Saturday November 15, 2014

Last night. She asks me to join her on the hospital bed. I hold her hand until both of us fall asleep. I wake up at about 1:30a.m. Mom has forgotten how to use her pain pump, so I sleep on the couch and wake up to administer doses whenever I hear her groan. At about 6a.m., Adam wakes and I go to my bed in the bedroom to sleep until 9.

Adam says she cried a lot in the night. “She was sobbing. She said, ‘There are so many books I haven’t read.'”

* * *

Morning. She looks around her without comprehension. “I keep being puzzled by all my stuff.”

“What puzzles you?”

“That it’s here. Because I don’t know how it all got here. I don’t know how I got here.”

“From where?”

She shrugged. “From hospice, wherever.”

“Well your stuff is here because you’re in your home. Your little house. You’re where you want to be. And hospice has been coming here.”

“How long have I been here?”

“You’ve been here the whole time.”

“I’m hungry,” she says. Eventually she chooses toast with butter and jam. As I’m getting up to go to the kitchen, she says, “If we’re this close to Erlangen, why can’t I have sauerbraten?” Erlangen is her hometown in Germany.

I just lean down and kiss her forehead. I’ll never have her sauerbraten again either.

* * *

She wants a pastry. She has told friends she wants pastry for over a week, and they keep bringing pastries that no one eats. But she says she wants something with “some nice cheese on it,” so I pull on a coat and walk to a nearby bakery. I walk past the stores we used to shop in, past the consignment store that put our proceeds toward hospice care, past the salon from which a stylist came to my mother’s home a few weeks ago to do her hair, and wouldn’t take payment. This town, which my mother came to for a relationship, and which she stayed in partly because she didn’t see much evidence of my settling down anywhere else, is filled with my mother.

I don’t want to be here after it happens. I don’t want to be among all these memories. I want to be far away.

* * *

She cries about leaving us.

“We’ll always be connected, Mom. Always be together.” Remembering that yesterday she asked her friend Inge if she would come and find her, I say, “We’ll be together in no time. I’ll come and find you.”

She comes out of the frozenness of her sadness and says, “You better bring some good Camino shoes.”

Berle and I laugh with her.

“Look at that smile,” I say, and I kiss her cheek and her forehead.

“You take such good care of me.”

“That’s because you’ve always taken such good care of me, Mom.”

* * *

She tells Berle that her body has betrayed her. Berle’s face is all empathy. She makes sympathetic noises. I don’t really know what to say, so I say, “Your spirit is still untouched, Mom. That body is just a vessel.”  Berle agrees.

“I wish my spirit could take my body for a walk,” Mom says.

* * *

She complains to Berle that she woke up at 5:30am and didn’t know where she was. Someone should have explained where she was so it wasn’t such a surprise, she says. She is crying.

I’ve never been able to withstand the sight of my mother crying, but when she’s crying because she knows she’s dying, because she fears losing us, I am utterly stricken.

This unspeakable sadness.

* * *

Berle and Silke are here. They rub Mom’s feet and reassure her. She cries, as she has been crying since I told her she was not getting better. I can’t even imagine what she feels, knowing the end is near. How can she not be crying in every waking moment?

I look at her in her hospital bed, usually sleeping, and my brain seizes up while trying to imagine her not being there in a week, the bed empty, the house quiet. There she is, breathing. Huggable. But next week?

Time is running out. What to do? How to make the most of her time? Should I be reading to her? Making her laugh? Reminiscing? I’m afraid I provide no entertainment, no comfort other than the constant attention I give her. I can’t keep my hands off her head, her shoulder, her face. I kiss her every other time I pass by. I fly to her when she cries. Of course she did all this for me, once upon a time.

* * *

Via text Mieshelle tells me that our beloved Great Dane, Jazzy, is being euthanized this evening. She lived longer than average, maybe ten or eleven years. But like Uncle Horst’s death and Renate’s dying, I am not nearly as affected by Jazzy’s death as I would be if I had been there. Or maybe I just have nothing left in the grief tank.

* * *

The morning rivers of sadness fade to a trickle in the evenings. Tonight Mom sleeps. Adam sleeps. Oma and Opa’s ancient clock sits atop the heirloom buffet and audibly counts down the seconds. They are slipping away, 3600 every hour, for several hundred more hours. They will be up before I know it. The heaters blow white noise. It’s not even eight.

The last party

The last party

Not Enough World and Not Enough Time

November 10, 2014  Cont’d

6:55p.m. Today felt a bit more blah than yesterday. Aggravation with landlord. Mom’s complaints and my telling her she sounds like an ingrate. “Oh, kick me when I’m down,” she said. “I’m not kicking you,” I said. “I’m holding you accountable: I don’t deserve this. I know you’re angry but please find something else to take it out on.”

I was in another room when she called my name. “What?” I said.

“Are you upset with me?”

Was I? No. Wouldn’t be good to say yes even if I was. “No.” I walked into the living room. “I just want you to be mindful of the people around you. We’re on your side.”

* * *

Five minutes ago may have marked the first time since this crisis began that I found myself wondering how I could endure. And I think the reason I wondered that is that I first noticed how Mom can still move her legs, still stand with help and for a little while, and it occurred to me that we could be doing this for weeks, months. Can I do this that long?

I need to settle into a rhythm, and to have no attachments. If we must both suffer longer, then suffer we shall. There is no getting out of it.

But I also feel fear. I imagine how much she will suffer when she loses the use of her legs. And when would she no longer be able to eat? The hospice nurse said last week that Mom would only be able to keep down broth, but she’s still eating. Though not much today. Yesterday was relatively abundant eating for her, but today was light. Vomited twice this morning. My theory is that it had been almost six hours since her last Ativan when she hit her pain pump twice in a row and drank some coffee. I thought of these additional steps, each a descent into the hell that can exist on earth.

I brought her coffee.  “Oh, small pleasures,” she said. She would later tell Berle and Adam, with half-joking amazement, “My son made me a perfect cup of coffee this morning.” And this in spite of the fact that I had not known about her habit of pouring hot water in the mug so that the mug doesn’t cool off the coffee. Mom likes everything hot. I can’t remember if she was always like that and I just didn’t notice, or if this is a new thing. But everything we bring her should be near boiling.

The tenderest moment I will have ever shared with my mother happens when I hug her gently up off her bed. She is so light, so fragile and vulnerable, and she reaches her hands over my shoulders and around my neck, so that I am at once supporting the weight of her and gently hugging her to pick her up. As we start moving she puts the top of her head against my chest and holds on tight. We walk in a shuffling minuet to another part of the house.

November 11, 2014

It’s a little after 10a.m. and Mom is still sleeping. She’s sleeping more and more, it seems. It may not be a coincidence that I am playing my music in the house for the first time since I got here. I also spent some time decluttering my bedroom and the living room, and moved her music system, which she can no longer bear to use, into my closet. This frees up room for Adam’s things, which are stored in the living room.

Mieshelle, my former wife, is arriving on Sunday afternoon. “How do you feel about that?” Adam asked, like a psychotherapist. I shrug. “It’s fine. She may get more out of it than Mom, but that’s fine too.” Maybe I will take a few days’ break in Telluride while she – and the next day, Linda – is here. Nah, I shouldn’t.

Gratitude. I am so grateful that Adam came back. I feel badly that he is spending so much time here, in this dark, crowded, cluttered little house in a town of little interest to him. But when I gave him an out to spend less time here – “I think this could go on for weeks or longer,” I told him – he said that he had nothing else to do and could work from anywhere. I’m grateful that my friend and colleague Mark Kozak has been doing such great work for our differential diagnosis startup.

She sleeps until after ten, which is unheard of. When she wakes up she begins to vomit up her coffee along with bile. Adam and I tend to her, wiping her mouth and nose, holding her bag, holding her up. She is shivering. She says, “I’m going to starve to death.”

“You’ve always come back and started eating again, Mom,” I say. But the last forty-eight hours have seen her eat very little, and she’s vomited up her beloved coffee two days in a row.

I haven’t heard from Candy about her idea of switching work shifts with coworkers. I wonder if this means she will make a decision simply by not taking action.

* * *

At a little after noon she asked for some Savoy cabbage. Whatever that was, we had none. I made her some salad, but it was “too rough”. The watermelon was too sweet. She didn’t want chicken noodle soup, and when I persuaded her to have some she complained that it had nutmeg in it, but she did eat some noodles. Shortly after, she asked me how to give herself a dose on her pain pump. “I forgot how,” she said, rooting around on the machine end rather than the end with the bolus.

She has slept most of the day so far. It’s a little after 2p.m.

At about 2:30 the hospice nurse Suzanne dropped by. She had called earlier to tell us to put a numbing cream on the chest area around Mom’s port so that a new needle could be put in. We found the cream and let Mom do it herself without supervision. Suzanne came into the kitchen where I was getting something to eat.

“I wanted to – I’m sorry, I shouldn’t laugh, but she’s just so cute. Your mom put the cream on her nipple. Which has nothing to do with where the port needs to go. I think we’ve reached another milestone here.” I relayed to her how Mom hadn’t been able to find her pain bolus earlier. She nodded.

Back in the living room, I got Mom her Ativan and Suzanne handed her the water. Mom put the bottle to her mouth and began to drink. “No,” I said, “you need to put the Ativan in first.”

Suzanne gave me a look. I left the room to hide my tears from my mother.

* * *

Mom looked at me a little later. “Did someone steal a street in Germany or a book?”

* * *

Suzanne said, “With about two weeks in life, there’s a phenomena where the person gets bedsores all over and nothing on God’s green earth can prevent them.”

I find myself questioning whether that’s the wisest thing she can say in front of my mother.

I get on a business call for almost an hour and walk back into the living room. Mom has drunk a good bit of Berle’s goat milk, and Suzanne has got Adam and Berle in a huddle that elevates my anxiety. Now she turns to me. “Your mother said – and I know she might change her mind at any time – she said there are too many people coming in here. So she may be doing the final withdrawal we do in our lives, and you might want to consider limiting visitors.” She gives some specific suggestions, but I am still reeling from my mother’s impaired cognition today, and now from this mention of “final withdrawal”.

* * *

Bonnie comes by at around 4:30p.m. Mom is sleeping almost continuously. Bonnie will just sit with my mother, occupying the same room, for almost three hours.

* * *

Occasionally she will awaken to lift a hand uncertainly and murmur, Do we need to take a pill?

And I will say, No, Mom, we don’t need a pill yet. We just took the last one a little while ago.

Because that is what you do, with the dying. You give them every comfort you and others denied them in their lives. Death, as someone once wrote about a hanging, concentrates the mind, and I would add the heart. Suffering does the same. We just feel more. More than we normally do, or ever have, or maybe more than other people too. We are ablaze with feeling. With each feeling there is a thought. Sometimes the feeling comes first, and then thoughts about it, and sometimes the thought comes first and I feel: sadness – my mother is suffering and my mother is dying, are there sadder words in the English language? – and fear – I fear her losing her life, I fear her continued suffering, I fear being lonely, I fear being unable to function – and guilt and the fear of guilt – Why did I say that? Should I be thinking this? I hope I don’t feel guilty – and finally compassion, which means being willing to be sad for another person’s sadness.

And when I tell my mother no, we don’t need another pill, she is satisfied because she knows what’s happening. She feels control over something in her life and safe in knowing that we are doing our pills the right way, like a good girl. And she drifts off to sleep again.

* * *

As I write this at a few minutes to nine p.m., with my mother and Adam both slumbering, I am wondering, Am I ever going to see my mom again? Or was yesterday the last of anything familiar to me? I’m in a foreign country. Mom has said something like that a few times in recent months. It’s all foreign to me, too – losing so much, so quickly, being so surprised, and with such enormous stakes, losing sight of my mother in her descent (or ascent?) to another level of consciousness.

God, I hope she’s happy there.

* * *

She moans softly and I look to see her turning more on her side. She is facing me. “That’s good, Mom. You move just like that.” I don’t know if she can hear me, but I praise and reassure her just in case.

She hiccups. It sounds a little different now. I think it’s shorter now, more of a sharp high yip or even ip than the throatier uhuup she did for months.

I am going to miss that.

I have to stop writing to get up and answer the phone, where a woman begins a marketing pitch honed by the type of company I hope never to run, and I say, “It’s not a good time.” My voice still husky with tears, no doubt. I am hanging up the phone already when I hear her moving to the part of her flowchart where she asks if there’s a better time she could reach me.

I take a break. Read and answer email. Grow bored of what’s left. I read what commenters have said to my posts on Facebook, and Like them all. I hear my mother groan and realize she is reacting to the chainsaw that just started up in Adam’s nose. I invite Adam to go into Mom’s bedroom and shut the door. He goes to the kitchen. I read the Facebook comments to Mom and have to keep stopping to get ahold of my self.

She dozily awakens, eyes barely open, and asks for some hash. “You want some shatter hash?” I ask, to make sure she isn’t confusing hash with her usual leaf. She does. I’m in her room trying to scrape the glue-like substance out of its tiny plastic container and onto some leaf in the glass pipe when she says, “Do we have to go pick up anybody?”

Adam chooses one route – “No” – and I choose another – “Sure, Mom, we can pick up anyone you like.” Either way, her primal anxieties are quelled.

From a Facebook message from a stranger who has followed my mother’s posts for some time: She will have thousands of people lining up in heaven thanking her for what she has done.

Will this morning mark the last time I see my mother as she was, or will she, a morning person if there ever was one, rally again tomorrow morning?

* * *

She asks for orange juice. Adam has already bought a low-acid variety. While I massage her head, he explains that he hasn’t filled the cup all the way up, but there’s more if she wants it.

“You’re my favorite son,” she tells him.

We both start laughing, and I am delighted to see my mother’s face light up with a smile.

As I tuck her in and tell her I love her, she murmurs, “Don’t worry. You don’t have to worry.”

November 12, 2014

I hear my name. I haven’t been able to sleep since Adam’s coughing woke me up, so it doesn’t take me long to get to Mom’s side.

“I need to go to the bathroom,” she says.

When we return to the bed, she is exhausted. She is breathing hard. “Put your legs this way,” she says, pointing at the slice of bed beside her. “Help me get warm.” There isn’t room for putting my legs that way, so I sit down on the bed next to her. I pull the featherbed into her from the front and embrace her from behind.

“You need to call your cousin Renate,” she says. I say I will, ask if we have her current number. She thinks we do, but the last time she told me about Renate she said she had no number of the facility where she was being cared for.

I hug her some more.

She says something to the effect of “I always wanted to be close to you” or perhaps “I feel like I want to be close to you.” Then she adds, “Even when you roll your eyes at me.”

“Oh, Mom, I’m sorry.”

She shakes her head almost imperceptibly. “It’s all right. I do it too. It’s like a pre-conditioned thing.” She tells me I can go back to bed. “I’m not that selfish,” she says.

* * *

Sometime later, after trying to sleep, I go out again. She is sitting forward in her bed and there is a moist patch on her featherbed. I hold her again and press her pain pump. She seems to have forgotten that she can use it, which worries me. I make a note to check on her pain level more.

I’m concerned she’s not drinking enough fluids. But then, enough to what?

Cousin Fiona and Aunt Christa write (as Google Translate renders it):

With great concern we pursue Inge’s dramatic deterioration of their condition. As we have read, Candy is with you ?!
It sure is good and important for your mother, that you two are there and can give you all the love and help.
Our hearts are heavy and sad, but we can remotely only pray for you.
Unfortunately Renate state is equally dramatic, as the your mother.
One can hardly speak by phone with her. All this is a great psychological burden for us.
To see two of our closest and dearest relatives in such a serious condition and experience.

Teach your Mom please all love and warm greetings and embrace it for us.

Our thoughts are very much with you.
In love and embrace
Fiona and your aunt Christa

* * *

I walk up to Mom’s hospital bed and she says, in that slow, almost inaudible murmur, “It’s been a week.”

“What’s been a week?”

“Since I been here. Anybody have any ideas yet? Are we waiting for something?”

“We don’t have any new ideas, Mom.” I couldn’t even mention what we might be waiting for.

“I’m happy the nausea has improved,” she says.

“Me too, Mom.”

She looks stricken. “I’m so far from where I used to be.” She begins to cry. “It’s like the guy said, you better starting livin or get busy dyin, and this shit ain’t workin.”

“No, Mom. It’s not.”

We put our heads together, my right hand on the back of her head, and she cries and I cry in a way that I think she may not notice.

* * *

The hospice assistant seats Mom on a cold shower bench. Mom protests pitifully. Surely they learned a best practice around warming up the bench first? “I don’t want to do this,” I hear Mom say. She’s practically crying. When she gets back to her hospital bed, she’s cold and exhausted from the trip.

The hospice assistant, who has said she must be going soon, asks Mom to roll over onto her side.

“I don’t want to do any damn thing for five minutes,” Mom says. A few seconds later, she smiles that slow smile.

“I’ll stay as long as you need me,” the assistant says.

“No, five minutes was the limit,” Mom says firmly. We all laugh. Mom beams.

* * *

“I’m always here,” Mom tells Lynn on the phone. “I’m just stuck in some crevice.”

* * *

She is gazing toward the TV, which is off, and its cabinet.

“Do you see something?” I ask.

“Just for a second,” she says. “I saw two blips of a camino sign.” She gestured vaguely ahead of her.

“You mean the yellow arrow?”

“Yes,” she says.

* * *

I sometimes think of all the love I felt and did not show, and of all the love I felt and could not show.

* * *

I run errands. WalMart, City Market. When I walk through these places I feel at once heavy and like an open wound. I feel I’m in a race against time. Imagine someone shows up on your doorstep and says, “Your mother has a few days, a few weeks at most, to live. Good luck.” It’s like awaiting an execution, hurtling toward a death sentence. There isn’t enough time. Just as I wanted the future to come sooner when I was anxious to get divorced and move on, now I want to hold the future at bay. Not enough time.2014-11-12 12.28.20

 

I Did Everything Right

November 8, 2014

Last night I was sitting with Mom in bed when Mom asked Candy to join us too. Because she didn’t want to make Mom move over, Candy got herself into an uncomfortable position with one leg on the floor and one on the bed, so that we now sandwiched mom between us. I grasped Mom’s arm with one hand and leaned on her shoulder, while Candy rested an arm across Mom and held my wrist. We lay like that for a while. I fell asleep there, and didn’t wake up until about 1:30a.m., when I heard Mom groaning.
I reached for her medication bolus and clicked the button. Nothing.

I called hospice. “What’s her pain level?” the woman asked. “Scale of one to ten.” I relayed the question to Mom.

“Four-and-a-half,” Mom said.

My mother is a connoisseur of pain.

* * *

Mom slept from six to six on Thursday evening to Friday morning. Last night she slept beyond 8:30. Maybe it was the increased Ativan she took because I had her take another at 1:30am. Maybe it’s the progression of disease. Or maybe that, at her request, I stayed with her the whole night. I didn’t sleep well, woke up a lot, and when I did I often reached over to touch her back or shoulder or arm.

At a little after eight, she stirs, moans with pain — and then I feel her pulling the covers over me!

“Thanks for staying,” she says in the morning. “That was really nice.”

* * *

“What happened to this place?” she asks, not long after. “It’s a dump.”

“What’s a dump?” I ask.

“This,” she says, gesturing around her. “I used to have my coffee, all my medication in the right place, everything. It used to be a high-class place. Now it’s all gone to hell.”
Occasionally these complaints are accompanied by a slight smile, and I think I detect one here. It has become harder to tell when she’s joking. She never had a particularly dry sense of humor. In fact, she often laughed at her jokes, which was often a pretty reasonable indication that she was joking.

* * *

We are coming out of the bathroom. We move, when I don’t just pick her up, via my arms under hers at the armpit so that we are in a sort of hug. I then walk backwards, holding her medication pump, as she gamely takes small steps after me.

“Do you want to go back to your bed or out into the living room?” I ask.

“Go out,” she says. “Out. In the little time I have left, I want to go out.”

Could this be a new level of acceptance?

* * *

Afterward, she is tetchy, complaining about how Candy fixed her coffee and such.

* * *

It occurs to me that I have never seen such suffering as my mother’s, and it just goes on and on. Every day a grueling affair. I’m not exercising enough.

* * *

Mom wanted spaghetti twice today. She ate several forkfuls of it, some of them enormous. Over a half an hour later, she wanted more. “A little less al dente,” she said. She ate with her eyes closed. Is that the Ativan, now at a half a milligram every two hours instead of three?

I’m sad that Candy is leaving. In less than half an hour. I’m sad for Mom, too, and I dread the clock striking noon, when Candy must go. Several people have offered frequent flyer miles for her, and she says she might be able to get more time off soon. Perhaps she can come back.

I ask Berle to come at around the same time Candy would be leaving. Peggie comes too, though she is teaching riding lessons all day and can only stay half an hour.

“You’re cooking now!” Peggie says.

I laugh. “I’m boiling.”

“You’re doing an amazing job,” she says. She gives me a hug. “You’re not going to regret anything.” She tells me about losing her own mother, 19 years ago – her mother had complained of flu-like symptoms and the doctor she went to failed to diagnose a heart attack – something that would not have happened if the doctor were using the algorithm built by my company, Physician Cognition. She was dead within hours.

“So you’re not going to regret anything. Candy might, but you won’t.”

“I will regret one thing,” I say.

“What’s that?”

“That I didn’t or wasn’t able to make the time to learn to cook from her. That would have allowed me to cook the food she likes during this time, and to honor her legacy and feel connected to her far into the future, when my memories of her will recede into the past.”

* * *

Two of my five surviving ribald aunts on the Powell side, Jayne and Willa Kay, arrive from Rangely. Willa Kay ribs my Mom. She teases her, treats her like she’s not sick. It’s nice to see.

“I have just been overwhelmed by everybody’s outpouring and kindness,” Mom says.

I feel good about this. Unrealistic though it may be, I want her to feel only love at the end.

* * *

Mom has a hankering for shrimp. She knows there are some still in the freezer. First she wants the shrimp with something and cilantro, but she soon changes her mind and asks for a salad. And a mayonnaise and olive oil dressing, along with cilantro. “Mayonnaise and olive oil?” I say to Willa Kay. “Have you ever heard of such a thing?” She admits she hasn’t. I wonder if Mom is not thinking clearly, but Willa Kay makes the dressing as instructed and Mom pronounces her whole salad very good.

“How is it?” Willa Kay says, returning from the kitchen. “That gonna make a turd?”

This breaks me up. This is the sort of thing her mother, Gramma Powell, would say. My mother has been channeling her irascibility and profaneness lately too. Mom later refers to her glass marijuana pipe as a “flying penis”.

“Well, now that you mention it,” Jayne says, and could have been speaking for all of us.

* * *

She is telling a story and Willa Kay asks when it took place. Mom says, referring to me, “That’s when he was pregnant with me.”

“Oh, that must have hurt,” Jayne says, looking at me.

* * *

It is a quarter after six, well past five o’clock, when Jayne and Willa Kay had said they needed to leave. “We’ve had a lot of good times, haven’t we, Inge? And we’re gonna have some more.”

Mom is crying.

“How ‘bout if I come back and do up your fingernails and your hair for you? Wouldn’t that be nice?”

Mom mumbled that it would be nice.

“Jayne and I were talking about getting down here, and I finally just said we gotta git. I’m so glad we came. So you could cheer us up.”

For a good ten minutes, Willa Kay strokes my mother’s hair. She is very tender with her.

“You were kinda chubby the last time I saw you,” my aunt says. This was June 2010, when Willa Kay gave my mother a book on organic and macrobiotic eating that catalyzed a dramatic change in my mother’s diet. “Can’t say that now, can you?”
Willa Kay asks Mom what color of fingernail polish she wants.

“Teal,” Mom says.

“Teal?”

“It’s the color used to signify ovarian cancer,” I explain. “Mom’s a member of the Teal Warriors Facebook group. It’s for survivors and caregivers.  I’m a member too.”

* * *

I come in from the kitchen with Mom’s ginger tea and I see Jayne stretched out across Mom and hugging her close, their heads touching. I see the tears in my aunt’s eyes and I am moved. “I love you so much, Inge,” she says, and now I have tears in my eyes.

I see Jayne and Willa Kay out to their truck. I am so thankful they came, and so grateful for the love they showed my mother. They repeat that they will come back. I say they should try to come back in the next week or two.

Jayne and Willa Kay are gone. “They brought a wonderful energy here,” I say to Mom.” I wish they could stay here for the duration. “Boy, for how little we get to see one another, Willa Kay sure is fond of us, isn’t she?”

“Yes,” Mom says. “I was surprised. Very nice.”

* * *

Mom wants the marijuana cream to put on her bedsore.

“Do you want me to keep the bed up or put it down?” I ask

“No, I’m gonna go to bed and read,” she says. “I need a little of my” – she waves a hand, which is out looking for the right word – “my routine. Take my teeth out, brush my teeth, get my oil.”

So we go through this routine. She has difficulty getting out of her hospital bed, but she still manages it. She can’t walk on her own, but if you put your arms under hers she will hold herself up and even move her feet. We walk the lengthy, exhausting camino out of the hospital bed and through the living room, across her bedroom and through another too-thin door into the bathroom. We pull her pajamas down and she sits down and I stand there because I’ve got the IV drip wrapped complicatedly around my neck. “Do you want me to leave you alone?” No. She is done.

She stands up with my help and brushes her teeth. She can stand on her own with something to hold onto or lean on. She drops the cap of the tube of toothpaste into the removable mesh filter that fits into the drain. She fumbles with the cap, trying in vain to pull it out, and I say, “Here, let me get it,” and I pull out the mesh filter, turn it upside down so the cap falls out into my other hand, and put the filter back. Is this her cognition now?

I give her half an Ativan and her cannabis oil – which she still takes, doggedly, in spite of its demonstrated inability to reverse at least her particular cancer – and then I ask, “Do you want some of your marijuana to smoke, Mom?”

She nods. “I just don’t give a shit,” she says, in that quietened, weaker voice she now speaks in. “And I want something that will enhance that feeling.”

“Enhance what, Mom?”

“Not giving a shit. I want to enhance that.”

And so we do.

* * *

I’m not feeling as depressed in the mornings. It’s no picnic, but it’s not the same heaviness I felt last week. I can still be moved to tears in a few thoughts or images, a few words spoken or actions taken.

But I am not feeling as much sadness as before. I am aware that doesn’t at all mean I’m beyond it. I’ve just moved into a different place. I’m still more likely than my sister to get tears in my eyes. Who knew I was so sentimental? But then I have lived a different story from my sister for the last few years I’ve spent with Mom. I’ve lived a story with Mom, and we’ve striven for the ending that for both of us was the only acceptable ending to the story.

* * *

I find that thinking about the aftermath is not something I should let myself do. It’s too overwhelming. And being right here, now, has been the best way not to think about my fear of depression afterward, and inability to work, or my sadness, or what I will do with the house and everything in it, or whether I should still plan to spend the winter in Telluride, as I did just a week before she started to go downhill so quickly, a week when I still thought we might get through the winter and even make it to her next birthday, May 31, 2015, and the last day of the lease.

A summary of the day I sent to my friend Grace via FB Messenger:

Me:  Mom is sleeping a lot more, and grappling with her fear and her anger that she “did everything right” and it didn’t work, but she’s not vomiting and in little pain

Grace: I wish for her to find peace in all this.

Me: yes, I fervently do. Maybe too much so. I need to be prepared for her going while angry and feeling betrayed by the universe

Grace: You have such a beautiful connection to her…

Me: It’s rarely felt that way before, but it’s good to feel now

Grace: I understand. I also understand her anger and feeling that the universe has betrayed her.

It makes sense that I’m not feeling as betrayed and shocked as my mother. No one could generate more hope for her health and survival than she herself has. Hope about organic food and smart eating, hope about the Gerson Method, hope about a long walk on an ancient pilgrimage, hope about chemotherapy, and above all, hope about cannabis oil. The oil, she believed for a long time, would save her.

How do you stay alive when you’ve abandoned all hope? Or it’s abandoned you. Maybe she has hope that something, something currently unpredictable and unnamable, will reverse this slide.

* * *

I hear my mother moaning while half-asleep. I walk in and ask if she wants to hit her painkiller pump. After I press the magic button, I put my face against hers.

“I’m sorry it’s been so hard, son,” she murmurs.

“Don’t worry about me,” I say. “I’ve been given this amazing opportunity to show love for you every day, all the time. It’s been really wonderful.”

* * *

Candy arrives back at her home in Alabama at around 9:35p.m. Mountain. She texts me as much and says I love you. I text that I love her, and that I am so glad she came. I finish watching “Belle,” which is better than I’d hoped. I write my friend and colleague Mark, in part:  I’m giving some thought to what I’ll do after Mom passes. I have a lease [in Telluride] until the end of May, but I may consider, when the time comes, relocating to Boulder in order to do a lot more networking [for the startup].

It’s 10:20p.m. and I can hear my mother hiccupping. The drawn in-breath, the high volume, higher and more forceful these days than her speech. Will I always be reminded of her suffering, every time I hear someone hiccup?

* * *

November 9, 2014

Vikki is one of the many people who barely know me or don’t know me at all but who have written with support:

I know you are having a tough time of it. Thinking of you and wishing there was something I could do to help from SC. If there is, please let me know and I will do it.

Hi Vikki. Thanks so much for reaching out. Especially since we don’t know one another very well, I’m touched by your compassion and generosity. All people can do from afar is what you are already doing. It’s also very therapeutic to blog and to hear from people about what I’ve written. It’s all less surreal than last week, but I’m still a bit disoriented at the suddenness, as is my mother. She’s surprised, shocked, feels betrayed and angry, desperately wants more time with my sister and me and others, and is scared. Those things weigh on me at least as much as her dying itself.

* * *

One commenter on the latest blog advised me not to try to delay my grieving. She said I wouldn’t be sorry. My friend Rivi told me not to feel guilty. A surprising number of people have written to say things along the lines of your writing is beautiful. I am touched and gratified, but I haven’t really understood it.

* * *

Briana Faith Powell, a cousin I have never met and who may have never met my mother, wrote on Facebook, “Drinking tea, thinking about Inge.” I cried.

* * *

10:15p.m. I am in the kitchen snacking while Mom sleeps. I hear something and walk into the living room to find her rooting around on the table that’s on the left side of her bed. It’s full of things and she’s searching around in the dark. I ask her what she needs and she says the pain pump – which has been on the right side all day, and is never on the table.
I go around and press the button for her. Then she wants to go to the bathroom, so the journey begins. On the way back she stops to catch her breath and says, “I need to find some water therapy or something.”

“Water therapy?”

“For my legs. I need to do something. I’m not going to just lie down here and die, no matter how [unintelligible] that would be.” She is crying.

“How what, Mom?”

“How gra-cious,” she says loudly, and now she is sobbing. I reach out to her. “Everybody keeps talking like it’s a done deal,” she says.

Indeed. A little earlier I had caught her crying – I thought she was crying because she didn’t want to die – and had said something about going to a beautiful place. I realize to my horror that my mother still thinks she can get better and I feel both sad and abashed for my presumption.

“I need an advocate,” she says. “Somebody to look into treatments.”

“What kind of treatments, Mom? We don’t know how to stop the cancer. Do you want to see a doctor? We can find out exactly what’s wrong with you and whether there are any treatments.”

She says that isn’t possible.

“It’s not about getting a treatment, Mom, so it won’t violate the hospice rules. It’s just seeing a doctor. You always have the right to do that. Do you want to see the doctor?”

I don’t remember her response, except that it wasn’t affirmative. She lies down on her side and cries some more. I kiss the top of her head.

“It would be wonderful if you got better,” I say. “That would be really great.”

I can’t give false hope. I can’t tell her that she will get better, or that we’ll find a way, or that it’s going to be all right. I haven’t said any of these things to her. Nor have any of her friends, now that I think of it. Not one. Under the circumstances, giving such hope would be unethical, even cruel. We simply have no evidence that this growing cancer can be stopped, especially now that chemotherapy, like surgery and radiation, is not an option, and the cannabis oil has, at best, merely slowed the progression of the disease.

* * *

Candy says, “I’m not worried about Mom, she’ll be okay. I’m worried about you.” And another time she says, “Are you going to be okay? You’re the one that will find out first. I worry about you.” I’m not used to my sister saying this sort of thing to me.

* * *

Mom is concerned about Candy and I dividing up assets, but Candy says we can handle it. “I’m not going to fight my brother over stuff,” she says. I promise Mom that we won’t fight about it. Later, in the living room, Candy says, “I’ll let you decide. You’re the one who paid for all this, who bought this house and helped her pay her rent. I’ll do whatever you want.”

That, too, surprises and impresses me.

* * *

November 10, 2014

She vomited at 5:30am this morning. My theory is that she had too little Ativan in her when she used her pain pump, twice, and drank some coffee. She was miserable.

“I don’t know how I got here,” she said.

“I know, Mom.”

“I don’t even know what I can do to get better.”

Oh, Mom.

She saw some vomit on her pant leg and she began to cry.

“It’s okay, Mom. We can clean it up. See?”

Later, when she saw that vomit was all down the front of her shirt, she began to sob. We went to the bathroom so that she could wash up.  I found her a new top and pants. When we got back to her hospital bed, she said, “I need to do something about depression. I think I’m getting depressed.”

“We can get you a prescription, Mom. But it’ll take about a month to work. Do you want me to call your doctor?”

She didn’t respond.

* * *

Close to 9am, she vomited again, but less forcefully and not for as long. Then she was cold and decided she wanted to take a hot bath earlier than planned (when Berle got here). “I think there’s not just one thing wrong with me,” she said.

We decide to watch Seth MacFarlane’s profane “A Million Ways to Die in the West”. She asks me to get into the hospital bed with her. She begins to cry. “I don’t want to go.”

“I know, Mom.”

“And that God the Father, I was always so afraid of him. I don’t want to see him.”

“That mean and uncompassionate God is a fairytale for children, Mom. There’s no such thing. No God worthy of the name is even less merciful and compassionate than humans. That God was invented by people with little godliness in them.”

“I know, it was just always beaten into me in Catholic school and Mass.”

“Whenever we go, Mom, it’s going to be to a place full of love.”

“I’m not ready to go now,” she says.

“I know, I’m just saying whenever it is that we do go.” I am making sure to use a generic “we”.

“I want to talk to the shaman,” she says, referring to a Native American she met a year or so ago. “I want to find out what Father Sky and Mother Earth say about all this.”

But I have called this shaman, Lance Little Wing, several times. I get only a busy signal, as if his phone isn’t working. I couldn’t find Lance Little Wing on the Internet. I’d never had occasion to think about it before, but if there’s one demographic I would expect to be the last to use the Internet, it would be shamans.

* * *

There are things my mother has said, or been through, that I know will haunt me.  Many times I know it instantly.  The sadness so sharp, what I feel for her on top of my own.

Ingelein, Germany, late 1940s

Ingelein, Germany, late 1940s

Days of Reckoning – and Waiting

2014-11-07 10.52.21

Candy wheels around our mother

For a little over a week after the rapid decline of my mother and her friends’ concerns brought me to my mother’s, I was in a state of shock – it all felt so surreal – and I felt a desperate urgency. I was on the verge of tears much of the time and I felt depressed, especially in the mornings. But now Mom is relatively stable. Greatly diminished in capability, without much quality of life, but she’s not getting visibly, or at least quickly, worse. We have slowed down, at least for now, into a grueling day by day of uncertainty and trepidation. And a lot of sleeping.

November 6, 2014

“Oh, you’re up!” she says. Her speech is a mumble, and not much above a whisper. “Took you long enough. What time is it?”

“Eight.”

“Oh, then you can go back to bed then.” She begins to sing. “You just called to say you love you.” A word was off and the tune was off. She sings it again.

“It’s ‘I just called to say I love you,’” I say. I sing it.

“That’s not the right tune,” she says. “It’s a country song.”

“It’s a Stevie Wonder song.”

She looks at me for a moment. “It’s a country song too. I think. Of course I can’t remember who it’s by.”

* * *

I’m on a client call but my ears prick up. Is my mother calling? Something doesn’t sound right. I open the bedroom door to see her vomiting into one of the blue bags we keep around. Meanwhile, my client wants to talk about his strategy for an interview with McKinsey & Co.

Afterward I come out to find that Mom’s old friend from Rangely, Linda Berry, has arrived to spend the day. Linda, who was a nurse for thirty years, is applying lotions to Mom’s back and straightening out the folds in her shirt to minimize bedsores.

Mom says to me, in her murmur, “Was Brianna here yesterday?”

I already dread answering her. Brianna is Mom’s granddaughter. She lives in Alabama.

“No,” I say. “She wasn’t here.”

Mom’s eyes fill up with tears.

“But you may have felt her here,” I say. “Or maybe you met her in a dream.”

“I’m losing it,” she says.

* * *

 

She is cold. I lay her featherbed on top of her blanket and lean down to add the heat of my body in an embrace.

“Do you need anything else, Mom?”

“What I want,” she says, her voice breaking, “I can’t have.”

I hesitate. Would it hurt to ask?

“What is it you want, Mom?”

“To get up,” she says, and now she is crying.

I lean down and cradle her head in my arms and put my face against hers. “I love you so much, Mom.”

“I’m sorry,” she says.

“For what, Mom?”

“Always on you,” she says.

* * *

 

Linda reminds Mom of some of their happy times. Going to the Sleepy Cat Ranch near Meeker for a fine dinner where “we were treated like ladies. So nice to live in Rangely and be treated like a lady.” And did we remember the time both women and their kids went up Dragon Road, above Rangely, to try to cut down a Christmas tree with an axe whose head fell off after every swing? Or the night, very late, when Mom had diarrhea and had run out of toilet paper, and neither one of them had enough gas in their cars to do any more than drive to work the next day, so they both set out walking and met halfway so Linda could hand my mother a roll of toilet paper.

“It was always amazing to me how she could just toss together such a wonderful meal,” Linda says. “It would take me all day and still wouldn’t be as good.”

They were both in Montrose together from 1987, when Mom arrived from Steamboat Springs four years after Linda, to 2002, when Linda moved back to Rangely.  After Mom’s divorce in the late 1990s, and before I bought her the house she now lives in, she bought a trailer.  “She bought that little trailer and she put it on a credit card, until a week later when she got a bank loan,” Linda says. “She always found a way. She was just so . . . and she still does, up to this very latest when she can’t do her own stuff. Very independent.”

This morning Mom’s abdomen was in great pain and she wanted to take a bath. I told her I had a coaching call and wouldn’t be able to help her out of the tub. She said, “I can get out. Independence is so important. Just being able to move a finger on my own.” She demonstrated the finger movement.

* * *

 

How did humans endure the end-stage ravages of cancer without painkillers? They must have been in such terrible pain that they’d just ask someone to kill them with a rock.

* * *

 

Where are all the men? It’s fascinating. Compassion, caretaking, and leave-taking must be women’s work.

Another day in which my depression is at bay. I wonder if my depression was being caused by my resistance, as well as the suddenness of it all, and whether now I have inevitably become more accepting of something that is no longer new, and that shows no signs of reversing itself.

* * *

I read about a study.  “Mass General study demonstrated the value of palliative care. Two groups of stage 4 lung cancer patients were given the standard oncology treatment, but one had a series of conversations with a palliative care specialist. The latter group chose fewer days in hospital, stopped chemotherapy sooner, went in hospice earlier and suffered less. They also lived 25 percent longer.”

* * *

 

At about 1:30, Mom asks for salad. Adam doesn’t think we should give her salad. Adam and I take forever to go out and buy it and prepare it, but when she puts the first forkful in her mouth, a smile spreads across her groggy features and she gives a thumbs-up.

The hospice nurse just can’t believe Mom is eating salad. She’d told her yesterday that she should have only clear broth until she hasn’t vomited for 24 hours. Salad is too rough, too hard to digest!  The nurse also tells Adam and me about the restlessness shown by people shortly before they die – lots of wants and needs, nothing satisfies. She says that’s the stage before the “transition” phase, wherein the patient comes to accept the reality of dying.  I feel my attention wandering away from the topic.

“But she’s not ready for that,” the nurse says. “Some people go quietly, and some fight tooth and nail. That’s your mother. She’s angry. She’s really pissed off. I would be too. So maybe she won’t be able to go with acceptance, maybe she will.”

It makes me indescribably sad to imagine Mom passing away while sad, angry, or afraid, rather than at peace. As I think about it, I realize I always assumed she would accept death before it comes. I pictured her patting my face, a weak smile on her own, and telling me it was all right, it was all going to be right.

* * *

 

I lean in to hug Mom.

“I haven’t seen you all day,” she murmurs. (Of course she has).  “Come here.”

We hug like that for a while. I pull away for a moment. “I’m so sorry this has all happened so fast. It must be very disorienting.”

She nods. “I’m not sure where to go from here.”

* * *

 

Mom says, “I keep thinking they’re going to tell me what to do. I think I’m being taken away.”

“By who, Mom?”

“Like kidnapping,” she says.

Oh my. Is this the confusion stage, which comes not long before death, or is this medication?

“I’m always asking where you are,” she says. “’Where’s Chris?” she said, using my old, and middle, name. “Where is he? I want to know where you are.”

* * *

 

“I know more about nutrition,” Mom says, defiantly, as some of us talk about what the hospice nurse said. Meanwhile, Linda says she learned long ago to give the patient what she wants.

* * *

 

She’s more groggy than usual, even less coherent or alert. I think she’s sleeping more, too. Whatever the cause, she sometimes asks childlike or confused questions, or makes non sequiturs. Again I wonder if this is the confusion phase, or she’s just medicated. But she’s no more medicated than in the past. She’s certainly not pressing her pain pump more, because we track that. Maybe it’s the confusion. ☹

* * *

 

Her eyes open. “Should I go to my bed now?”

“Sure, if you want to. Do you want to go now?”

She nods. Adam and I take all her things into the room, and then we support her weight as she sort of walks to her bed. She gets in and I begin to throw Oma’s wool blanket over her top sheet.

“I’m sad,” she says.

I pause and look at her. “I’m sad, too, Mom.” I climb up and hold onto her. “What are you sad about?”

She says something vague that I’ve forgotten.  Then she says something about money with X’s on it.

“Maybe that’s why I’m agitated,” she murmurs.

“Why, Mom?”

“Because I need to get to the money.”

* * *

 

“Do we have enough money for the cab?” she asks. It is as if she is relaying the content of her dreams in real-time.

Eyes closed, she lifts her left hand and wiggles it.

I say, “Plenty of money, Mom.”

She nods, satisfied.

* * *

 

She seems to be in more pain, and we press the button on the bolus more often. Somehow she has kept down the salad she ate.

She picks up the vaporizer pen in one hand and a lighter in the other. She seems on the verge of trying to light the pen, as if it were her glass pipe, when I take the lighter out of her hand. Another time, she seemed unsure which end of the glass pipe to put to her mouth.

She is confused. She is irritable – is that similar to being agitated? The hospice books say that confusion and agitation happen when the patient has one to two weeks to live.

* * *

 

Adam picked up Candy at the airport. I was on a conference call with my team at Physician Cognition.  Adam told me that when Candy went into the bedroom, he could tell that Mom knew who it was before she opened her eyes. Then she opened her eyes and they touched one another’s faces. I had wanted to be there to see them see one another again.

Candy says to me, “This doesn’t seem real.”

* * *

 

November 7, 2014

“It’s so surreal,” Mom says, “that we’re sitting here talking about death and dying.”

“It is surreal, Mom.  That’s exactly what it is.”

She begins to weep. It hurts me to see this kind of pain, such bald-faced fear and disorientation. I hold her head against my chest. “I know it’s all been so sudden, Mom. It’s happened very fast.” She presses her head against me. “But you’ve been so brave, and you’ve touched and inspired so many people.”

I think of one of my favorite pictures of her. It’s in brown and white. She is wearing a skirt, and she’s on a scooter. In this picture she always looked to me a little like Anne Frank – her age, her face, her hair, the optimism of her smile, her boundless humanity. Her hands are on the steering column of the scooter. She’s leaning forward, standing on one leg with the other pointed straight behind her. On her face a beatific expression, evidence of the capacity for joy so rare in the rest of her family. “What a life,” I say, “for that little girl from Erlangen.”

“I was always on the move,” she says, waving her hand slowly. “Couldn’t sit still.”

* * *

 

At other times she is still not coherent. There are the non sequiturs, the questions she knows the answer to. When we don’t hear her, and we say so, she is irritated and repeats herself, or shakes her head, with annoyance. In other words, the sort of thing I would do.

* * *

 

She wants to go out for a walk, so we three bundle her up and I carry her to her

Candy and Mom

Candy and Mom

wheelchair out front. We go to Main Street but she is cold and wants to go left for one block and then back home. She could already taste some hot tea. I did take some pictures of my mother and sister that I’m very fond of.

* * *

It broke my heart to see her just sob with the pain from her bedsore. Candy was already sitting on the bed near her. I once again cradled my mother’s head in my arms and told her how sorry I was, and how courageous she was. But then I found one of those donuts that air travelers put around their necks to help them sleep. I fitted it under her, with the open side pointing behind her, so that her tailbone area was suspended. She felt instantly better.

* * *

 

I find that I still don’t have bottomless reservoirs of patience with her, but I do have nearly continual compassion for her. I attend to her quickly, I coo and call her sweetheart, I hug her and kiss her and comfort her. I’m always asking if she needs anything. I move with alacrity, just as I once admired my friend Julio doing, seemingly for everyone he met on the Camino de Santiago. I have probably done more of all this for my mother in the last eleven days than in all the rest of my life with her combined. I feel a little badly about that.

I wish Candy could stay here to go through this with me, with Mom, with us. With the original tiny family that was put asunder when I was thirteen, and my sister was taken away from me. We have never lived in the same house or even city since then. But she would forfeit her job if she stayed any longer. Forty hours is all we have.

* * *

 

Candy texts me to say she’s at WalMart. She’s looking for something for Mom, she says, maybe flowers or something that smells nice. I feel so helpless, she says, and she is so negative I was trying something positive. I wrote her back:

Yes, she’s in the irritability phase. Also all this anger and grief that she’s dying is combined with her own personality to make for some complaint. For all we know, she may also be suffering from severe depression. A lot of the symptoms are certainly the same.

To this Candy sent a frown-face icon.

I talked to Mom about metaphysics, about what I’d read and what I’d experienced and heard others experience. Beings of pure love was one that stuck out in my mind. I said we would both go to be with them, to be in their embrace of pure love and acceptance, the thing we’ve always craved most. She seconded that, saying it was hard to find. I recorded it on my phone’s voice recorder.

* * *

1:54p.m. She’s very negative right now. Everything has a tinge of annoyance – of anger, perhaps. She worries about details like repairs around the house and complains of them not being done sooner, and is anxious for them to be done soon. She worries about money. “What will it cost?” she says, when she hears that my Land Rover’s back door doesn’t close properly.

* * *

 

“Last time you were here, you weren’t here,” Mom says to Candy, sadly.

Unfortunately, Candy disputes this, and now Mom is both sick and not feeling heard.

“We didn’t talk about essentials,” Mom murmurs. That’s true, but Candy again resists.

“You might want to give some on this, Candy,” I say. “Mom did ask you guys several times to look through photo albums with her and nobody did, and she said even at the time that everyone was always on their phone. So it’s valid, even if it’s not a serious crime.”

But her anger, the bitterness, the sadness is hard to hear. It’s hard for me to feel. Silke says, “I can totally understand her. She tried her best and did so many difficult things and she hoped it would be enough. But it wasn’t.”

Yes. I think Mom feels cheated, betrayed by hope. To stay alive for so long, she had to have outsized, even unrealistic expectations about living, and very little thought of dying. “I know this is a surprise,” I’d told her earlier. “It really surprised us. And I know that’s scary.”

* * *

The hospice nurse arrives. Suzanne. Candy is also sitting on the couch. Suzanne examines the pain medication pump that Mom drags with her everywhere.

“She’s used twice as much medication in the last twenty-four hours,” says Suzanne.

Not long afterward, Mom begins to cry. I go to her and hold her. I am crying too, for the first time in a day or two. She looks at me and looks into my eyes. I look at her and want her to see only love.

“Did you hear that?” she says. “It’s double.”

“Is that why you’re crying, Mom?”

“It means,” she says, “I’m going to die sooner.” She weeps.

* * *

 

Mom says she thinks her unsteadiness could be due to her medication. Suzanne disputes that, gently but firmly. “It’s not your medication, Inge.”

“Well we don’t know what the problem is,” she says.

“Mom,” I say, “we know that the cancer is spreading in your body. It’s getting into organs and pressing against nerves, and it’s causing such pain in you that you have to take pain medication constantly. It’s making you vomit when you eat most food.”

Suzanne says, “Inge, I know you’re angry, and I get why. I do.”

“No, I’m not angry,” Mom says, and in a fairly typical Momism, she adds, “Sometimes I’m just pissed off” – she takes a breath, and then tears fill her eyes – “because I did everything right.”

Ah, there it is. I fight back tears to see such vulnerability and pain, such crushing disappointment.

“You sure did,” we all say. “You worked and tried hard. You did everything right.”

“I just need to take some time with this,” Mom says, her voice small. “Everybody is telling me what’s going to happen but I need to feel inside myself and see for myself.”

She cries for some time, on the way to the bathroom, and on the way back, once she gets into bed.

“You leaving doesn’t sound good, either,” Mom says to Candy.

“I know, Mom,” Candy says. “It doesn’t sound good to me either.”

* * *

 

Suzanne tells Mom she’s leaving, Mom smiles warmly and thanks her. Suzanne kisses her on the head.  “I know you don’t want to hear it,” Suzanne says, “but you just need to relax. If you keep being angry and fighting it, it’s going to shorten your life.”

“I didn’t have a lot of time to adjust,” Mom says.

“No you didn’t, but, whatcha gonna do now? You just need to relax, sweetie. Find your way into this new place.”

* * *

 

“Our world doesn’t exist without our mom in it,” Suzanne is telling Candy. She’s on her way out the door. She had told me the same thing a few days ago. She encouraged me to seek out support or talk to their counselor.

Today was a day of reckoning.

I’ve pushed out of my head any notion of the grieving I will do afterward. To think of that, on top of everything else, would be too much. I know I can only imagine the pain I will feel from the loss of my mother, from the suffering she endured, from my remaining guilt.  But one day at a time.

Mom's young friend Gregory gave this to Mom a few years ago

Mom’s young friend Gregory gave this to Mom a few years ago

The End of Suffering vs. The Will to Live

November 4, 2014

Mom and Adam in the kitchen store

Mom and Adam in the kitchen store

Mom reached for her lamp in the night and fell out of bed. It was a little after 4am. Adam heard her calling and helped her back to bed. He recorded a half milligram of Ativan and an unusual three pumps from her pain meds.

When I go into her room at 8a.m., she says, “I’m feeling a lot of pain from my leg. And I’m dizzy.”

“I’m sorry, Mom.”

* * *

She is irritable this morning. I hear her tone of complaint. It’s always been hard on me.

* * *

 

“I should get outside today,” she says, “don’t you think?”

“Sure, if you want to, Mom.”

“I need to take better care of myself.”

“You’re doing the best you can.”

“I just don’t know what to do anymore.”

* * *

 

She wants to call her bank because she has been convinced that she paid a doctor’s bill that she keeps getting in the mail.

“They’re probably not open till 9,” I say.

She looks at me. “It’s not 9 yet? This has been a long day.”

* * *

 

“She shouldn’t leave today,” Mom said, breaking into tears. She’s talking about Muschi. “But I know she has to watch her grandkids.”

Muschi brings mom fried potatoes and eggs. Mom begins to eat, and then to cry. She pushes the food around on her plate. I reach out to clasp her shoulder.

“I can’t do this all day.”

“Do what, Mom?”

“Watch her leave.” She looks at Muschi. “We’ve both been through this many times. We know how this goes.”

“Every time I’ve said goodbye to you,” Muschi says, “I’ve seen you again, and this time is no different, honey.”

* * *

 

I suggest that Mom turn over on her side, so as not to put stress on her bedsore.

“Which way?” she says. She speaks slowly, and a bit thickly, like a child just awakened.

“It doesn’t matter,” I say. She begins to roll to her right side, groaning a bit as she does so.
“You can put a pillow behind her,” the hospice nurse says.

Mom turns her head toward me. “You stay here,” she says.

“I’ll just be your bolster,” I say. I climb onto the bed and support her back with my body. The hospice nurse is delighted. My right arm goes under the stack of pillows and my left rests on Mom’s arm. She dozes. I work on being present. Mostly asleep, she says something about a fairytale. “A fairytale, Mom?”

“He dies in the end,” she says.

We all die in the end, I think.

She is so fragile. So scared. I cannot but weep unobtrusively.

In the living room later, Adam surprises me by opening his arms. “Come here,” he says.
The instant we embrace my body begins to shake, and for the first time in my life I cry on a man’s shoulder, and his hug just goes on.  His eyes are wet.

I sometimes find myself wondering how I will manage during the period after her passing. Will I be able to work? I think I will just leave the house empty until spring, no renters, and then sell it. The work that needs to be done on it overwhelms me.

* * *

 

“I love you, son,” Mom says.

“I love you too, Mom.”

“More and more,” she says. “Not less and less.” She is silent for a moment. “Amazing how that happens.”

* * *

 

In the late morning, Adam and I look into flights, prices, and frequent flyer miles to get my sister, who lives in Alabama, back to Colorado.

Adam and Muschi hatch the idea of bringing in a proper hospital bed, one with air sacs that are supposed to alleviate her bedsore. It is delivered just before noon. Mom’s German friends Monika and Inge come as well, and talk to Mom. We have the bed installed in the living room – with a couch on either side for visitors, and the TV straight ahead so Mom can watch her German TV shows. The air pump that circulates air through the sacs is quite loud. I take it off the metal bedframe and sandwich it between two pillows, where it can barely be heard.

* * *

 

At around noon Muschi goes into Mom’s room to say goodbye. “I will see you soon,” she says. “I love you.”

“I love you,” Mom says, groggily.

“I love you so much,” Muschi says. She caresses Mom’s face and hair.

“Just go,” Mom says, not unkindly. She always preferred just to be dropped off at the airport curb, to avoid all the long goodbyes and drama that go with accompanying a traveler inside.

They say goodbye again, these two women who have been best friends since 1948, and who came to the United States at almost the same time, and Muschi departs.

* * *

My good friend Tedd writes me from D.C.:

i send you a big hug. cried again when i saw your mom’s pic with you. it’s so hard cam, i am really sorry you and your family are going through this. always your brother, tedd

So many people have written so many nice things, some by email, some on Facebook, and some in the comments on the blog.

* * *

Mom’s legs bear some weight today, but she still began crying as we came back from the bathroom. “I can’t even be dignified,” she said. She is now in her hospital bed, which we’ve put in the middle of the living room.

“You’re plenty dignified, Mom. Courage and grace personified.”

She gave me a skeptical look.

* * *

She is upset that Pumpkin doesn’t come to her as before. I know her well enough to suspect that she is wondering if Pumpkin senses something changed in her. What she says is, “It’s too much change.” She pets him and cries more than I have seen her cry.
“I’m just having a little falling apart,” she says.

“Don’t you worry about that, Mom. You have every right. I’m surprised you’ve not done it more.”

Somehow, my nephew Dylan materializes. He hasn’t contacted Mom since he moved out of her house about four months ago. She hears his voice as he comes in the back door. “I’m not ready for this,” she says. But he is here. She hears his tales of financial and legal woes and I catch what I think is impatience. He does kiss her on the head and tell her he loves her as he leaves to go to his second job.

But before he leaves, Mom says, “I don’t know how to do this. This has been such a horrible day. Muschi left. I can’t walk . . . I just want to go to sleep.”

Did she literally mean to sleep? Or something more final? “Whenever you want to do that,” I said, in either case, “you just go ahead.”

Not long after, she asks for another Ativan, sooner than usual, because she literally wants to sleep.

* * *

In the mid-afternoon, Mom has a hankering, she says, for steak and broccoli and zucchini. Adam goes out to buy these things and then prepares them. As a cook, Adam is very enthusiastic. The meat, though expensive, turns out not to be very good – not Adam’s fault – and I’m still hungry.

“I’ll fix you something,” Mom says.

“You’ll what?” Mom hasn’t been able to stand up to cook in the kitchen for over a week now. Cooking is one of the many basic pleasures she’s been denied.

“Help me up,” she says.

So we actually shuffle into the kitchen together, and Mom goes to the refrigerator, bends down to rummage around, finds chicory roots and yogurt, and somehow stands up long enough to slice up the chicory — and make a chicory salad with curry, olive oil, and garlic. I’ve had this before from her, with sour cream in place of yogurt, and it’s surprisingly good. The soundtrack to “Rocky” may as well have been playing in the background. To sit up, to get out of bed, to shuffle and stagger to the kitchen, to bend down and push and lift, to stand and wobble and cut and pound, to stretch toward a high shelf and carry, to stir, to shuffle and stagger back to bed, to get into the bed without much use of legs – she may as well have been competing in a decathlon. If her goal was to rage, rage against the dying of the light and do what she loved, she succeeded.

* * *

I know she has a lot of life left in her because she can still annoy me.

This reminds me of a Facebook comment by my sister-in-law Jannilynn’s mother, Linda. When Linda visited a week ago, she spent a good deal of time massaging my mother’s feet. In her comment, she said that she could tell from touching my mother that it wasn’t yet time.

November 5, 2014

I was wearing my ear buds last night, watching TV on my laptop, and didn’t hear Mom calling for me. Note to self. Adam eventually heard her, and helped her to the bathroom and back. We were both up again in the middle of the night with her, and as I was stirring in the morning I heard her hiccupping – three or four times, five or six hiccups each. And sure enough, she then started to vomit. Adam was holding the bag when I came out to help. She cried. When she was done she felt dirty, wanted all the sheets cleaned, wanted to brush her teeth and use mouthwash, wanted a bath.

“I feel like I’m walking into this strange place and I don’t know what’s going on or what to do. And I’m doing it all alone.” She wept.

* * *

Getting to the bath, and into the bath, and out of the bath, and dressed, and back into bed, was a trial.  She seemed in constant pain, and it took great effort to move in small ways.  “I just wish I could go to sleep.”

I wasn’t sure I heard her. “What, Mom?”

“I wish I could go to sleep. If it must happen, I wish it wouldn’t be prolonged. I just want to go to sleep.”

So maybe that’s what she had meant yesterday, when she said she just wanted to go to sleep.

“I know, Mom.”

As she was getting back in her hospital bed she said to me, crying again, “I don’t want to do this.”

“I know, Mom.”

She curled into a fetal position and wept quietly. Tears ran down her face. There is nothing harder to watch. I leaned over the bed railing and hugged her.

“When’s the last time we clicked my pump?” she asked.

“It doesn’t matter, you can do it whenever you want.”

“Click it again,” she said. “I don’t want to feel anything. I don’t want to feel mad, sad, glad, nothing. I just want to be nothing.” I pressed the delivery button on the pump’s bolus. She had already used her glass pipe after her vomiting. Now I offered her my vaporizer. The marijuana would reduce her anxiety, and help her to sleep, and even help to prevent further nausea.

She had just taken a few draws on the vaporizer when Rob came by. Rob is Mom’s neighbor, the one who rolls the joints, and takes out her trash, and drops by to check on her.

As he walked into the living room his eyes took in her hospital bed. “Wow,” he said. I sort of hoped he wouldn’t do that. “You’ve got your own hospital bed and everything. Not doing too well?”

“Not worth a crap,” she said. “You’ve sure been gone a long time,” she said.

“My back has just been killing me,” he said. Rob had recently had back surgery. “I thought I had problems walking,” he said. “I’m sorry.”

“Light one up,” she said. “Let’s share one.”

So they did. Adam, who had begun to nap in Mom’s room before coming out to meet Rob, went back to sleep.

“It may have been a dream,” Mom said, “but I dreamt I was in a tub of pot water.” In a sort of fog now, she asked if there were any good movies out on Netflix or RedBox or at Hastings Books and Video. “I want to see a good movie,” she said. “Not weird, not heads chopped off, not muscles growing out of weird places.”

After Rob said goodbye she lay back and closed her eyes.

To sleep, perchance to dream.

* * *

In an email a few days ago, Julio had said he hoped I would soon share good news. I told him I wasn’t able to do that. He wrote back this morning.

Amigo Cameron
My spanish , my pseudoenglish aren´t good enough to express feelings
Only one thing i can tell you, Courage !
The fact that things like that happens, makes my “ faith “ collapse…
I insist, Courage !
Perhaps…
Julio

Mom awoke from her nap and turned on the TV, she said, to get her mind off things. I was putting on my shoes to hang out the wash when she said, from her hospital bed, “I didn’t know I would be so incapacitated. I thought I could do stuff. Slowly, carefully, but I thought we would still be able to do stuff. Now I don’t even know where I am.”

* * *

7:52p.m. Mom is sleeping. She is losing the use of her legs, and feels pain in them. That may be due to the retroperitoneal tumor pressing against her spine and other nerves. I think a doctor told us this could happen. She is on constant pain drip, and must take Ativan around the clock to avoid vomiting. And today she vomited in spite of the Ativan. As it has been for over a week, the vomit was greenish bile.  The hospice nurse says that may just be her liver giving up, and she may be switching to liquids-only pretty soon.

Yesterday and today Mom said what was previously unthinkable: that she just wanted to go to sleep and not wake up.

Her desire to end her suffering is finally starting to outweigh her will to live. And that is becoming my feeling as well, but more slowly. Because I’m not the one suffering, I can’t know how to properly weigh the pros of the longer life with the cons of the terrible psychological and physical suffering that life requires.

But I do know that the more time I spend fearing the end, the less time I’ll be spending with my mother.

* * *

At 8p.m. I walked into her room. “Mom,” I said. “Mom. I need you to take your Ativan.” She did not open her eyes. She just opened her mouth. I put the pill in her mouth and still without opening her eyes she drank water from the bottle I held to her lips. A few moments later, she groaned. “What is it, Mom? What hurts?”

“My butt,” she mumbled, meaning the bedsore.

Nothing to be done about that. I had already applied a marijuana and coconut salve. She whimpered again. I stood there for a moment, watching her, and then walked around the bed. I got up on it and put my head against hers.

Look at her hands, crossed over her abdomen. Inscribe them on your memory. They are thin now, fingers slender, the left one looks older, in this light, than the right one, which looks smooth. My right hand lies atop hers. These are the hands that have lovingly made me many a meal. They’ve caressed me and patted me on the shoulder or the side of my head. I take in her clavicle and collarbone, more prominent now, but familiar, a part of her I must have seen thousands of times without registering what they looked like.

I start writing in my head, and then I think about the fact that I’m writing in my head rather than being present with my mother, and then I’m reminded of Natalie Goldberg, in Writing Down the Bones, relaying the story of how her Zen master had told her, “Zen or writing. You can pick only one.” Which affirmed for me that writing is a form of meditation.

Pay attention. Be here now. See and hear her breathing.

I then began thinking again, this time about the two little books hospice had evidently decided it was time to bring and casually leave lying around. The books listed the symptoms that tell you someone is likely to die in one to three months, and when they’re days to weeks away, and when they’re hours to days away. Specific changes in breathing that I didn’t commit to memory apparently happen near and at the end.

She’s still breathing.Mom and Leaves

Sticking It Out

November 1, 2014

Mom loves hands

Mom loves pictures of hands

Adam had been up with my mom since 4a.m. He’d made her coffee, grated her some apples – but she vomited up the apple.

“It’s just an apple,” she said, distressed. “An apple a day,” she added, her voice breaking. She began to cry. “I haven’t eaten in four days! Look at me,” she said, lifting her wrists. “I’m just skin and bones.”

* * *

“I love you,” she said.  This was later.

“We’ll always be connected, Mom.”

“Always have been. I don’t know how,” she said, “but I always felt that. You were such a gift. A gift. But I didn’t always treat it well.”

“Treat what well, Mom?”

“My gift,” she said. “You.”

* * *

A little while later, she called to me in the living room. “I’m getting dizzy. Can you come in here?”

I am lying on the bed next to her. Her eyes are closed but she is not sleeping. I am working on my laptop. With my left hand I caress the back of her head. I put my laptop down, sit up, and turn to her.

“Mom, I want you to know that whatever you think you did or didn’t do, you are forgiven. I just feel love for you. Just pure love.”

She nods serenely and pats my face.

* * *

The hospice nurse came and assured us that the Ativan could not be causing her nausea. Mom had probably misconstrued some cause and effect. “I think your nausea is caused by the progression of your disease,” she said.

These are chilling words.

But in fact, Mom has taken pain medication and Ativan all day, with no vomiting. A hospice nurse suggested that Mom may have felt ill a time or two, taken an Ativan – and vomited shortly afterward, before it had time to work. She could then have concluded the Ativan was at fault.

* * *

We were sitting in the living room when she said, “I wonder how much money is going to come out of this inheritance. We’ll find out next week.” The inheritance refers to her brother Horst’s estate. Horst died intestate, without a will, in June. Bonnie had told me, soon after I’d arrived in Montrose a few days earlier, that my mother was doing all she could to hang on for my sister and me. “She wants to make sure you guys get that money,” Bonnie had said.

“Did Christa tell you that?” I now said to Mom, referring to my mother’s only remaining sibling, who lives in Germany. “That we’d know next week?”

“Yes. I don’t know how long I can do this,” she said, referring, I think, to the act of staying alive.

She wonders if she can stick it out for another week?

* * *

Muschi arrived from Las Vegas and Mom cried. “Sixty-five years!” she said. They hugged a good long while, Mom’s face tear-streaked, and before long we had moved Mom into her bed, along with all her logistics. She was tired from the Ativan, barely able to stay awake. At a little after 9p.m. I took Muschi to the worst, saddest, seediest motel in all the world, and she insisted on staying because it was only three blocks away from Mom.

November 2, 2014

I awoke to the sound of my name. It was about 4:30a.m.  I bolted upright, debated pants, ran out in my boxers. Mom was at the kitchen’s backdoor. “Pumpkin!” she called. “Pumpkin.”

She was calling Pumpkin, the amateur therapy dog.

She turned and saw me. “I thought you were calling me,” I said.

“Just trying to get him inside,” she said.

She went back to her coffee, tottering on uncertain legs. Her movements were not precise; I helped her to keep her balance. She would drink about a quarter of her cup of coffee.

* * *

Adam and I offer her different choices of food.  She tells us: “If you guys keep talking about eating, I’m going to get really nauseous if you try so hard.”

She hasn’t eaten much today. She vomited once, losing what she had eaten. Sometime before noon, she interrupted a lengthy period of dozing with these words: “crunchy fish filet”. She didn’t even open her eyes. “I want a crunchy fish filet.” We baked two from the freezer, but one was perhaps freezer-burned – Mom spat it out — and the other was salmon, which Mom had never eaten and never would, Muschi relayed to us later.  Still no nutrition all day.

* * *

Between naps, Mom instructs Adam on how to make potato and leek soup her way. She has him bring a spoonful to her on the couch, where she tastes it and pronounces what it lacks. Sea salt. Dill. Heavy cream.

She mostly sleeps as we watch the British TV series, “Poirot”. Pumpkin, the old orange poodle, sleeps on her stomach or above her head.

I am standing near the couch when Mom reaches up for my hand. I kneel down on the floor and she holds my hand against her cheek. She begins to cry. “The pain,” she says, and I can’t make out the rest of it.

“What, Mom?”

She works to pull herself together. “The pain,” she repeats, “losing you – I don’t think I can handle it.”

* * *

I talk to my sister for a good while, but Mom is asleep or talking to the hospice nurse throughout. I hear Mom asking if someone can share their thoughts on food. What to eat. The nurse says it’s too individual, no advice to give. Mom is disappointed. When Candy calls back, Mom is again asleep. I make another blog post, “Missing Her Already”, and not long afterward my sister’s best friend, Tanya, who loves my mother as her own, calls to ask how I’m doing. She is amazingly loving and supportive and I thank her.

* * *

I come in and hear Mom and Nancy talking about my sister, I gather.

“. . . there’s bills, and work, and everything. I remember what it was like, being a single mother and not being able to go anywhere because of the kids.”

This makes me happy for my mother and sister, my mother’s understanding.

A few minutes later, she is complimenting Nancy on the life she has. “I see your grandkids and your kids and you’re making all those improvements. It’s really enviable,” she says. And then she turns her face away from Nancy, but I can see her features form into pain, and I see the tears in her eyes.

* * *

Candy calls again, but now Mom is asleep, again. I am determined to get them talking more. They have always had a challenged relationship, a good deal of miscommunication, and my sister is now commuting and working 14-hour days. They haven’t had much conversation since my mother and I flew my sister and niece to Colorado in June.

* * *

Silke comes and rubs Mom’s feet. Mom suddenly sees a vision of hazelnut cheese spread on crackers, along with green grapes (not the red we had on hand, those were too sweet for this kind of cheese). Adam and I head out to try both City Markets but we can’t find the Mirabo cheese she wants. I pick out a spreadable sundried tomato and basil cheese, and Adam gets another kind of cheese and hazelnuts he plans to crush and mix with the cheese. “That won’t work,” I say to him, “trust me.” Mom eats quite a bit of all this, especially Adam’s concoction. We cheer her eating.

We have her on the Ativan again.  I now keep a notebook of everything she takes and when — food, pain meds, Ativan, cannabis oil.  Now we can spot trends, and also know when to give her the next round of meds. She has stopped the frightening vomiting, which had seemed to portend a rapid, and therefore frightening, decline.

* * *

In the kitchen Muschi says to me, “Can’t we get your sister here? I would pay for her ticket.”

“It’s not so much the cost of the ticket,” I say – my sister couldn’t afford it but I’d put it on my credit card – “but the income she’d lose if she took off from work. She doesn’t have vacation time yet.”

That gives me an idea. I know the solution to this problem. I send a text to Candy, asking how much after-tax income she’d lose if she came for a week. Maybe we will get her here after all. I am thinking of Candy as much as Mom.

Carrie, who was 15 when she walked the Camino with us and just graduated in May, stops by to say hello.

* * *

At a little after 8p.m., I ask if Mom wants to call Candy. She says she’s too tired. Then she changes her mind. She fumbles with her new phone for a while and I take it from her and find Candy’s number. They talk for ten minutes or so. Mom cries a little when Candy repeats some of the memories she’d written in her letter. They must be talking about the possibility of Candy coming to Colorado. Candy says, “I’m workin on it, Mom” and Mom gives a timeframe of the next seven to ten days.

Candy told me that Mom’s oldest grandson, Dylan, who lives down the street but hasn’t been in touch with Mom since about July, is afraid to come here, to Mom’s house. “What bullshit,” Adam says.

* * *

Adam made a very good potato leek soup today from Mom’s recipe. Other than the Halloween candy, I’m eating pretty well. I’m not exercising – I don’t see anything in Montrose I want to do. I’m not a runner, I have no bike here, no mountains to hike, and no yoga class that interests me. Weightrooms bore me. I suppose I should look into Gold’s Gym and see what classes they have. Exercise is a great anti-depressant.

In the evening, Mom always goes to bed first – sometime between 7 and 9p.m. – and Adam falls asleep while we’re watching a movie. I finish the movie and go to my bedroom, where I am nightly faced with the Hobson’s choice of either closing the door and risking not being able to hear my mother, on the one hand, and subjecting myself to Adam’s locomotive snores on the other. Of course I leave the door open.

Improving, Worsening, or Leveling Out?

October 31, 2014  Journal

I am beginning to wonder if I gave too much weight to the fears of Mom’s friends on Monday.  Mom said this morning that she had wondered what was going on, on Monday. Her friends may have been greatly affected by the suddenness of her decline, but would it continue at the same rate?

* * *

12:15p.m. Mom vomits, a lot. My heart sinks. She must get sustenance. She has kept down none since yesterday.

* * *

12:45p.m. After a hot bath, before she can even get her shirt on, she begins to vomit again. She finds one of the blue vomit bags on the floor. “It’s like a heart-retching,” she would say later. “A stomach-heart-retching. Deep down.” I bring her a shirt and a glass pipe filled with marijuana. In between her vomiting I light the pipe for her and she breathes in the smoke.

“This could be cachexia,” she says, nodding. She positions her mouth back over the bag.

Cachexia. The wasting disease. We worried that she had the dreaded cachexia earlier in the year, when she dropped over fifty pounds in a few months. It’s cachexia that usually leads to cancer’s fatal malnutrition. But my co-founder in Physician Cognition, a doctor, told us that cachexia is not present with a certain albumen score. Mom’s score meant she probably didn’t have it. We were relieved at the time. But what about now?

Later, she says that she thinks the culprit is the Ativan. “Every time I take that lately,” she says, “I vomit.”

The hospice nurse thinks the vomiting could be due to her cancerous liver. She uses the phrase “your liver involvement”.

I ask the hospice nurse if the IV painkiller could be a cause of nausea too. “A few days ago,” I said, “she thought she was getting nauseated right after pressing the button.”

“I may be just sick,” Mom says firmly.

“Yes, but if you’re nauseated right after doing something, that something may be a partial cause.”

“It may be just coincidence,” she says.

What was this? We have switched roles. I seem to be the voice of hope, and she the voice of reason.

* * *

A movie that Mom isn’t paying attention to has about 20 minutes left. “Hey, Mom,” I say. “Do you want to go for a wheelchair ride?”

“Not right now,” she says. But ten minutes later, she says she’s ready. She sits up to put on her shoes. Her gorge rises and she grabs a blue bag, into which she vomits.

“Oh,” she says. “I hope this isn’t going on all day.” She begins to cry. I hand her a warm towel with which to wipe her face.

Adam and I load her into the wheelchair. She doesn’t like that it’s out front. She hadn’t remembered it was there. A minute later, she says, “I saw that we have some madelines to eat, I wish I’d known that.”

“Do you want one now?” I say. We are still near the house.

“No, I just want to know these things,” she says. She is trying to reassert a semblance of control over her life.

The neighbor’s dog, Cassie, runs up to the fence. Mom has fed her bologna nearly every day for years, and this has made the shy, small, fat Border Collie my mother’s best friend. Mom reaches down and through the fence and pets Cassie. “I know, it’s all so different now,” she coos.

Magic Wheelchair Ride

Magic Wheelchair Ride

I push her for a while, but it is hot and I ask Adam to take over so I can take off my sweater. Mom puts it on her legs, which are cold. She takes my hand and we walk like that, to Main Street. There we stop to take in a tiny Latina girl dressed up for Halloween as a bee. Mom is pleased and watches her for a while, offering compliments, and then we cross Main. No one is talking much. I am thinking cachexia. She probably is too.

She spies a new store that sells kitchen supplies and asks if we can go. “Good afternoon!” she says, as her wheelchair crosses the threshold. The clerk says hello. Adam pushes her through the aisles as she points at and sometimes fingers various kitchen implements. I pay attention to my state for a moment and confirm that I am feeling miserable.

I imagine that I am in one of the dreams I know I will have some day – the dreams in which my mother is there, simply existing, or doing something mundane, and I am filled with the greatest happiness. Why can’t I feel that now? Why can’t I look at her as if her presence is the rarest, most precious thing? I try this, and it works – I feel a smile taking over my face, and joy fills my heart – but then it becomes too much and I have to stop for fear of weeping. There is no nostalgia without pain. The meaning of nostalgia, in fact, is a return to pain.

* * *

Mom said she had wondered what was up on Monday, with everyone acting as they were. She was too groggy to express any surprise that people would visit from so far off, and at the same time, but now she says, “I just don’t want anyone to know something I don’t know.”

“No one knows anything more than you, Mom.”

* * *

Silke, Berle, Monika, Peggie. They began arriving at around 5pm. Peggie brought necklaces with flashing lights. She was ready to give out treats. “No one ever comes to my house,” she said. She lives on a ranch outside of town. Mom said the last trick-or-treater to come here was 8 years ago.

Silke told a story about how her husband Gordon once rode along in a Lear jet that flew to San Francisco, where the three passengers had lunch and then turned around and flew back to Colorado. The assembled women all made different sounds about this fact. Mom said, “Someone is out there living my life.” She paused. “And I’m living theirs.” She said she was tired of “this cancer crap”.

* * *

“Cameron, you’re so calm,” Peggie said. She thought it was the cannabis oil she had provided me with.

“I thought he’d changed,” Mom said. “He’s been really attentive – well, he’s always attentive. But – and he was patient. I thought I must be dying.”

The women laughed.

November, 2014 | Camino Not Chemo!

To Ferry to the Other Side

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 in Heaven with Spices in St.-Jean-Pied-de-Port

Mom in heaven with spices in St.-Jean-Pied-de-Port, September 2011

* * *

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.  All but Julio DSC_0015

Words Seem to be Important to Me

Wednesday November 19, 2014

Today she is more exasperated than ever. Irritated to repeat herself, explain herself, or be asked any question. The non sequiturs are more frequent, and in fact have become the great majority of what she says. Petty worries. Simultaneously vocally unhappy with her pasta and upset that she has to risk hurting someone’s feelings by saying so.

The confusion often manifests as arbitrary and impossible commands, such as to add hamburger meat that we don’t have to a bowl of spaghetti that’s already before her. She tells Adam how to add salt and pepper to a meal.

* * *

“Where are all the boxes?” she asks, looking around her.

“What boxes?”

“The boxes that got all this stuff here.”

“You brought this stuff here over the last eleven years, Mom. This is the same little house you’ve always loved.”

“Is it still 512 North 3rd Street?”

“Yes, same address.”

* * *

I say aloud that today would be another good day to do some work at Starbucks. Mom is being helped off her portable commode. She says, “What I want you to do first is go through my cabinets. I don’t have . . . much life left.” A few minutes later she is sobbing and being comforted by hospice’s certified nurse’s assistant (CNA), Bonnie (not to be confused with Mom’s friend Bonnie).

After Bonnie the CNA has gone, Mom says, “She says it won’t be long anymore.”

“What won’t be long anymore?”

“This . . . thing.”

What the hell?  “Who told you that?” I gather she means Bonnie. I need to have a talk with her, or her bosses.

“We need to talk about some things. My funeral.” She puts her hands to her face and begins to sob. “This is so hard.”

* * *

She repeats some words from a poem that she wants read at the Irish wake (my words; she calls it a memories party) we will put on for her. I find the poem online and read it to her with a firm, measured cadence, so that she may feel the truth of it:

Do not stand at my grave and weep.
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.
— Mary Elizabeth Frye

“To save a wretch like me,” Mom adds.

“Amazing Grace,” I say.

“I did it my way,” she says.

“Elvis,” I say. “Are those the songs you want us to play?”

She nods.

* * *

Linda struggles to put marijuana salve on Mom’s bedsore. Her hands are cold and the touching probably hurts. Mom begins to cry. I go to her and comfort her and say I’m sorry.

“Oma took only eleven days,” Mom says. “She didn’t cause trouble for anybody.”

“Neither are you, Mom.”

* * *

She is crying. “I don’t know how to do this,” she says. I can still hear the pitch of her voice rising throughout her sentence.

I don’t say anything for a while. I think of saying nobody does, but I’m not convinced that’s true. I think of Zen masters and yogis I’ve read about.  There are people who train their minds for death, such as the Tibetan Buddhists whose text, Bardo Thodol, is called, by Westerners, the Tibetan Book of the Dead. Relying in part on training to cultivate lucid dreams and wake oneself up from them, the meditator who masters the Book’s techniques can remain conscious as she crosses the threshold into death, and can remain conscious after the body has died. And of course I have heard of regular people who feel they had a good life, enough life, and are ready to go.

I say to her, “Do you remember what you’ve always said about relationships? ‘Let go with love’?”

She nods. To my left Linda is already agreeing.

“I think that’s what you do. Love and forgive yourself, love your loved ones, try to feel love in place of fear.”

* * *

She hasn’t slept this morning at all. She is concerned about many things, and she is very weepy. Is this the “restlessness” the hospice books speak of, which means “days to hours” left?

* * *

She asks if I have any questions for her. She doesn’t want me not to know things. I say I will ask her if I think of any and she says something about running out of time. “There’s no big deal,” she says. “Even if it seemed like that when you were young. You have good DNA.”

* * *

I look up to see her gazing at me as she lies in her bed. I look back at her and smile. She continues to look at me very intently, and then she turns her head and starts to cry.

* * *

I am less weepy myself, and more – what’s the word? Numb? Detached? Accepting? It has occurred to me that I will feel much more sadness after her death simply as a by-product of thinking about the past more:  about things she did (and we did) and things she said. Nostalgia is just memories of what is no longer possible. That’s why the word in Greek means a return to pain rather than undiluted happy memories.

* * *

“What are your plans for the day?” she asks me.

“I’m going to stay right here with you,” I say. “I’m not leaving.”

* * *

She is concerned that the stained glass window has been removed from the living room. There was never such a window.

* * *

It’s nearly 5p.m. and she has slept very little today. One of the books hospice left a few weeks ago is called “When Death is Near: A Caregiver’s Guide”. It says in there that with “days to hours” to live, the patient becomes agitated, restless, and may have a burst of energy.

Is this that?

* * *

My mother is, in many ways, already gone, already lost to me. And I am stricken by her crying from sadness, or fear, or her broken-hearted disappointment. I fear that will stay with me palpably and for a long time.

* * *

I wake her up to take her medication. I ask her to turn over onto her other side. Then she is crying.

“What is it, Mom? Are you hurting?”

She nods.

“Where does it hurt?”

“All over,” she says, weeping. “It’s like it’s every cell.”

Oh, wow.

I show her where the bolus is and where its button is, and we press it. Two beeps, a pause, and then another beep. .20 ml of hydromorphone is injected into her port. We recently increased the hourly dose from .15 ml to .25 and she’s still hurting enough sometimes that we have to press the bolus one to three times in a short period of time. The cancer is on the move.

* * *

To be unable to think and express oneself clearly, and yet still be able to feel physical and even psychological pain. To be losing one’s mind but sentient enough to be aware of it and suffer. Hardly seems fair, does it?

* * *

A few moments later she spies the emerald-green couch next to her bed. “Who brought that couch in?” she asks.

* * *

And later, she is clearly exhausted and says something I can’t understand, followed by “and just get it over with”.

“That’s why you’re going to a better place, Mom. Because this is just miserable for you.”

“Do you have to leave tonight?” she asks.

I think my tone is at least as important as what I say. If I sound unworried, caring, protective, then the content that she may not understand anyway becomes less important. Now I say, “No, I’m staying here all night, with you. I’m going to sleep right over there on that other couch so I can keep an eye on you and make sure you don’t have too much pain.”

And she is satisfied.

Thursday  November 20, 2014

At about 3:50a.m. I hear her groan. I am sleeping on the couch with the bolus a foot away. Whenever I hear her in pain, I click the button she has forgotten how to even find. Now I give her a milligram of Ativan. She is fairly alert, even asks Adam to fetch her coffee, which he now makes like an expert.

During much of the discussion that follows, she is often crying or sad, but I will refrain from adding that fact to every thing she says. By the same token, I will also omit most of the times I had to ask her to repeat herself so that I could hear or understand her.

When she asks questions these days, she is utterly guileless, and trusting. She’s like a child. The things she asks about seem to me to be like a list of her anxieties and concerns.

“I can’t tell you how shocked I am,” she says, and this is when she begins crying. “I don’t want to be here.” And then: “I’m trying to hold on to my sanity.”

Not long afterward, she says she needs to call the dentist to get a replacement for the lower dentures that we seem to have lost. “He has it on file,” she says. She doesn’t like how the lack of dentures slurs her speech. As with her threats to return her crappy phone, this notion of having the time and need to have new dentures made betrays her fleeting moments of reflexive denial. It’s the life force in her.

* * *

She asks something about our life together. I mention that she was always loving to me.  For forty-seven and a half years.

She looks at me with amazement.

Really? You’re that old?”

I say I’ve been with her for over two years, in Montrose and in Telluride. Before that I was in Portland, Seattle, Bend, New Jersey.

“That’s quite a resume,” she says. She looks at me. “How did I luck out so much?”

I just want to turn everything around to be about her.  “You deserved it, Mom. You deserved every good thing that has happened to you.”

“You’re a good man,” she says, as if she were just learning it.

“You raised me,” I say. She smiles.

“Do we have cows?” she says.

* * *

She looks to her left and sees Adam. “What are you doing here, Adam?”

“I came here to visit you,” Adam says gently. “And Cameron. But mostly because marijuana is legal in Colorado.”

* * *

She stirs. “Is there an inheritance story behind this?”

“Yes,” I say, though there isn’t yet. “It’s a good story.”

“Is there a headline?”

A what? Sure. “Yes.”

She leans back. “A blessing,” she says. “Health, a little money. Love.”

* * *

At times she sounds like Samuel Beckett.

“We’re not the worst, are we?”

“No, we’re not the worst.”

“I mean, our standards is good, right?”

“They are very good.”

* * *

“I think it’s a memory recovery that I need,” she says. Still holding on.

* * *

“I want to know everything.”

* * *

Mom, Adam, Cameron

Mom, Adam, Cameron

* * *

And later, when she sees me sitting to her right: “Where’s Cameron?”

“Cameron’s right there,” Adam says.  Adam and I exchange looks.

* * *

“I keep missing people. I don’t know why I keep missing people. And my brother just died, right?” She cries.

“Yes,” Adam says. “Horst died a few months ago.”

She looks at me. “You were everybody’s Swiss darling.” I’m not sure what this means. And to Adam: “You’re my best coffee warrior.”

* * *

She comes out of another reverie to ask, “Do I have to have assistance in dressing?” As if she were trying to be briefed on her own life.

“Do you want assistance, Inge?” Adam says.

“No, I want to know if I can dress myself.  Am I able to.”

“I think a little assistance is helpful,” Adam says, rather than saying “no”.

* * *

“Do you want to sleep?” I ask her. It’s the middle of the night. I sure do.

“I don’t want to sleep,” she says. “Bits of my life are falling away. If I have one.”

* * *

“Do other people have beds like this?”

“No, Mom, you have a Swiss Army knife of a bed. The nicest in town. It’s like a smartphone.”

“I don’t know how to use that,” she says. “I’m a geriatric idiot.”

“No,” I say, “you’ve never been an idiot. You’ve always been quite clever.” Adam seconds the motion.

* * *

“What’s the situation?” she asks me. “How did you react? I mean, did I fall?”

“No, you didn’t fall. Your cancer has just been spreading.”

“Do we have a lot of good steady friends, too?”

“Yes, very steady,” I say.

“A lot of friends,” Adam says.

She cries. “That’s good to have,” she says, wiping her eyes.

“It’s great to have,” Adam says.

“We can raise a barn,” Mom says.

“Yes, we can raise a barn,” he says.

“But I can’t walk.”

* * *

She opens her eyes, looks at me.

“You’re a great mom,” I say.

“Am I a great other things, too?”

“Sure you are. A great cook—“

“A great friend,” Adam says.

“A great walker,” I say.

* * *

It’s about 4:30 a.m. Adam leaves for the airport shortly, so he’s packing quietly as Mom talks.

* * *

She says she’s very fastidious and so wants an easier way to go pee on her own, without calling to anyone else first. I can’t gather what she is saying, but she seems to be designing some kind of contraption. I tell her that’s not necessary.

“I’m almost always here, so you just have to ask me for help.”

She brightens a bit. “Are you a gentle person?”

“Yes,” I say. “Why?”

“Because I’ve had it so rough.”

* * *

Out of nowhere, I hear her breaking the silence in the room to say, “Do we have a father?”

* * *

Sometime after saying something, she stirs. “Is that a true thought?”

“Yes,” I say. I can see that she’s upset about her cognitive deficits. “You have many true thoughts.”

She reaches for my hand. “My soul seems to want to find you.”

* * *

Before I can ask her about this, there’s a knock at the door. It’s Bonnie, come to take Adam to the airport. Mom cries as Bonnie hugs her. “I’m having a snot or identity crisis,” Mom says. “One or the other.” Later she looks at Bonnie. “I can’t remember you.”

“I’m Bonnie,” says Bonnie.

* * *

Gesturing in my direction, she says to Bonnie, “I didn’t know what to call him for a while there.”

“You can just start with ‘son’,” Bonnie says.

Mom’s eyebrows go up. “I wasn’t sure,” she says, almost conspiratorially.

* * *

Silke arrives at about 10:30a.m. I had been trying to go back to sleep, thinking it was earlier, but I get up. Mom tells Silke that she hadn’t known who I was. “I thought, That’s a handsome man there.” A little later my mother says to me, “I sure hope I like you.”

* * *

And then one of those exchanges that I will carry with me.

“I just feel like bits and pieces,” she says, sounding so sad. “Are they ever going to come back together?”

“Yes, Mom. They will come back together. And you’ll be much happier.”

“Soon?”

Sigh. “Yes, soon.”

* * *

She has been sitting in bed with her eyes closed. She stirs. “I was thinking, that as soon as I get back on my feet” — Silke and I look at each other — “maybe out of pride, I can make a walkway, an elegant one, so I can get around the house.” She points at the walls and draws an imaginary railing or something. “Because people do challenges,” she says, as if answering an objection.

Mom and I have both moved into new stages. She can no longer walk or support her weight. Getting into and out of bed is slow and painful. Moving four feet to the portable commode can exhaust her to the point of nausea. Until ten or so days ago, she only got nauseated during the relatively much longer and more arduous trek to the bathroom. She sleeps most of the time. And perhaps most distressingly, she is disoriented, confused, and very sad.

I began in an agitated state of fear and sadness and desperation. But three and a half weeks on, I seem to have settled in. It’s grueling, my conditioned mind offered up the other day. No, not grueling, I think, It’s not that bad. I exist at a surely temporary equilibrium. Even the morning depression seems to have lifted. I suspect I am able to maintain this balance only because it is too soon, perhaps even impossible, to feel what I will later come to feel I have lost. Too soon for the bittersweet memories of a bygone era. Too soon for any regrets. Even too soon for the sadness I fear I will always feel about my mother’s weeks-long psychological distress.

When her cognition was still in place, my mother expressed a pained dumbfoundment about her situation. “How did I get here?” Now that her reality comes and goes as fluidly as a dream, when she says “How did I get here?”, she literally doesn’t know where she is. The anxiety about her sudden illness has changed to a more metaphysical anxiety about place and existence.

* * *

Hospice nurse Suzanne is late to a meeting that includes the hospice-provided social worker. I can feel people gradually becoming more concerned about me. Adam suggested that I hire outside help. Mom’s friends say, “How are you holding up?” I don’t know. I don’t know what to compare it to. I catch the end of Mom complainingto the social worker about losing her mind, when she says, “Is it Alzheimer’s? Do I have Alzheimer’s?”

“No, honey, you don’t have Alzheimer’s,” the woman says. “It’s just the progression of the disease. The cancer causes the organs to shut down, and the brain is another organ, so it’s going to be affected too.”

“It’s normal, Mom,” I say. I know what she needs to hear.

“It is?”

“Totally normal. There’s nothing wrong or bad about it.”

She seems relieved.

* * *

Suzanne and the social worker have come to tell me what to expect, and they ask me if I’m comfortable taking my mother to the bathroom and cleaning her up if she’s incontinent. I have a simpler answer: “I’m pretty sure my mother wouldn’t be comfortable with that.” Adam, Suzanne, and the social worker suggest that I hire someone – Adam has even offered to pay – to help me. But I can’t figure out, and no one, not even the home care expert Suzanne recommended, can explain to me how I could use such a person. I don’t need or want someone here all the time, or even predictable periods of time, and what I would want – someone on call when something less predictable happens – is not what they offer.

* * *

I talk to her of the afterlife. As to heaven or an afterlife, I am agnostic – I don’t have particular beliefs, nor do I reflexively (like an atheist) disbelieve. (I do disbelieve hell). But I set all this aside now and paint a picture from the near-death experiences I know Mom is familiar with. The social worker who has come to talk to me helps.

I tell her something like, You will always be connected to me, Mom. You won’t miss me because you’ll always be able to be with me. But I will miss you because my soul is going to be stuck in this falling-apart body a while longer. You are moving on to the next Camino. The next stage.

“But all alone,” she says, mournfully.

You won’t be alone. You’ll be able to be with Candy all the time, and Brianna, and Carrie and Jannilyn and Gregory and Annika – but also Oma and Uncle Horst. You can travel wherever you want to go, just like you always wanted to do, and feel the presence of everyone you want to.

* * *

I am explaining to Monika that we were up at about ten to 4 in the morning, and that Bonnie came at about 4:30 to take Adam to the airport. Mom takes this in. “Boy,” she says, “we’re busier than a whorehouse.”

* * *

She says she’s going to bed. It’s a little after six. For the next four hours I surf Facebook, the web, my emails, and my journal.

True History of the Camino de Santiago

Mom’s new favorite book, featuring Mom, Carrie, and Julio, by Cameron Powell

Love and Confusion

Sunday November 16, 2014

Last night at around midnight she called to go to the bathroom. Adam heard her first and when I walked out she was already on her commode. “Let’s give her some privacy,” Adam said, and we walked into the kitchen. There we began a lengthy vigil. She was bent over her knees and she sounded like she was in pain. We’d pop our heads out to ask if she was done yet, if she was all right, if she needed help, and she’d wave us off.

I helped her back to bed and sat on it next to her. She put my hand against her cheek and closed her eyes.

* * *

In the morning she still has some confusion but is feisty. Adam is up early with her and gets her coffee, canned (!) peaches, tea, bone broth, and a quarter of a slice of toast. He gives her the Ativan on schedule. Muschi calls and I give the phone to Mom.

“I can’t believe this is how it ends,” she says, “after stealing potatoes and pears.” She’s referring to their poverty and starvation in late 1940s West Germany. She’s crying. Then she switches to Bavarian and I can’t really follow. When Mom gives the phone back to me, Muschi’s voice is changed.

* * *

Berle, Peggie, and Peggie’s husband Pat stop by. “We’re bringing church to you, Inge,” Peggie says. “Because church is wherever we are. We’re going to do communion, and I don’t care if I’m not a priest. This is our own communion. I don’t need somebody between me and God.” She and Pat and Berle read from Isaiah, John, and Psalms. They say prayers for my mother, and for me. Peggie finds some of her favorite praise songs on Pat’s phone and plays them for Mom. She weeps and tries not to let Mom see.

Adam and I leave the house to pick up some pizza that Mom has suddenly begun craving. When we return she tells me, referring to Peggie and Berle, “They tied me down and made me listen to stupid foreign jokes.” The women laughed at that. “Inge, you are still so funny,” Peggie says. Mom doesn’t eat more than a bite or two.

* * *

At half past noon it’s time to pick up Mieshelle. Adam offers to go with me, and at the airport he walks inside to find her.

“It’s been a long time!” she says, as we hug on the sidewalk by the car. “How are you doing? Nevermind,” she adds, “I know how you’re doing. I read your blog.” She is still beautiful, hasn’t seemed to age, and she’s very smartly dressed.

It has been about three and a half years since we last saw one another. I reminded her that we’d been in the Barnes & Noble in Bend, Oregon, negotiating our settlement agreement.

At the house she goes to Mom and hugs her. It seems they are crying. Berle, Pat, and Peggie take their leave, hugs all around. Mieshelle chats amiably with my mother. She has brought a wave of positivity into the house. I am happy to see someone, anyone, here to love my mother, but I also feel, I suppose, something related to reconciliation. They’d fallen out of touch during the divorce, though in recent years they have corresponded on Facebook. I know my mother is important to Mieshelle, and I know my mother has tender feelings and compassion for Mieshelle. I feel good that she is here, and I am relieved.

I listen in and watch them talk for a while, and then I think it would be good to let Mom sleep and let Mieshelle be alone with her. I explain to her the workings of Mom’s world – the pain pump and Ativan, her need to be on her side, her water bottle and vaporizer pen, the bed control and the marijuana salve – and Adam and I jump in Mom’s car to go to Montrose’s newly remodeled Starbucks. “Well that was sweet,” I say. “I’m glad she’s here to love my mother.”

* * *

There is a dividing line between our parents as mortals who yet breathe and our parents as legends that grow as time winds on. I have a feeling I will talk about my mother even more once she is gone.

* * *

She ate some plain yogurt earlier this evening. Several spoonsful. Spilled a good bit on her pajamas and chest, and then made it really clear she didn’t want any help with all that. Mieshelle managed to clean it up anyway, and to put a paper towel on Mom’s chest. Adam and I went to Starbucks to work and catch up on correspondence while Mieshelle gamely made entries into our log for the Ativan and pain pumps she was giving Mom. She’s a positive influence on the household. Adam and I tend to keep to ourselves, in quiet pursuits. Mieshelle, by contrast, is in full charm mode.

Adam went to bed early. Mieshelle and I watch a movie, then begin a second. She is cold so I get her the heavy Afghan blanket and drape it over her. She falls asleep and now both my ex-wife and my mother, separated by a few feet, are asleep before me. It’s an odd sensation. This is the person I shared part of a life with, have memories of traveling and parenting with, then fought and resented – and she’s right here, as if none of the unhappy stuff happened.

Monday November 17, 2014

The days wear on. Today marks three weeks since I sped from Telluride to Montrose, afraid my mother was about to die. Mieshelle and Adam are up before me, though their military maneuvers in the kitchen wake me up before I’m ready. Adam comes in to tell me my mother is alert if I want to spend some time with her.

She is concerned about what happens to some of her things. There are certain items that she wants to stay in the family. She has me take a picture down from the wall and look for the name written on the back. There is no name. She tells me to write “Inherited from Ingeborg Amanda Cheatham” on it.

“Who do you want to give it to?” I ask.

“You!” she says. She looks up at the shelves to her left. “If Oma’s Madonna doesn’t stay in the family,” she says, “you’ll all be cursed.” She looks at another figurine below it. “That black Madonna,” she murmurs, “pretty much the same.” Adam laughs at this. “Giving away, losing, stealing, nothing bad should happen to those Madonnas.”

She points to the armoire housing the TV in front of her. It’s neither an antique nor particularly attractive. “My son hates that, but I like it.” She starts crying as she mentions an aunt of hers who had a similar armoire “that stood there right when you walked in,” and concludes, wiping her eyes, “That’s why I can’t die. I’m too attached.”

* * *

When we ask her to turn over on her side to get off her bedsore, she asks, innocently, “Which way?”

* * *

Tanya, my sister’s best friend, writes me a long text of encouragement and love. I get a Facebook IM from one Karin van Deyk, who writes:

Hi Cameron,

I don´t know you personally, I am a Facebook Friend of your mother – I’ve never met her, but she touched me very deeply – we often talked about cancer – I myself had breast Cancer 13 years ago, so we had something in Common and we shared hope, Inge is that kind of woman I always wanted to be – always open minded, always kind and helping others – even her words always are kind.

* * *

I am reading and answering emails. She lifts her head from dozing and says, “We don’t have a dog, do we?”

* * *

Mieshelle is washing dishes in the kitchen. I find her presence surprisingly comforting, and I feel myself not wanting her to leave so soon.

* * *

“They say there will be four more days of this,” she says to me.

“Four more days of what, Mom?”

“Of this. Illness.”

“Who told you that?” The hospice assistant who was just here?

She waves her hand vaguely. “Somebody.”

“Nobody has said it will last four days, Mom.”

* * *

Sometimes she says things that are somewhere between an attempt at a joke and a slippery grip on reality. A cat with shiny pajamas – who turns out to be Adam in his silk robe — promised her a bon-bon. The cat also told her to take oolong tea into the garden, where waterfalls sing.

I watch her as she falls asleep. I notice that I’m numb to the enormity of her imminent non-existence. I kiss her forehead and smell her hair and skin, and then some tears come.

I am mostly numb from this waiting game. I did struggle not to cry at the funeral home. The woman handed me the cremation contract and I found myself shaking from the war between the impulse to cry and my efforts to hold it in. I was surprised to find Adam teary as well.

* * *

I told Mieshelle I was glad she came out here and it’s been nice to have her here. She agreed. It’s both strange and very familiar. I’m glad this happened.

* * *

We increased Mom’s basal dose from .15ml per hour to .25. The hospice nurse said Mom  would probably sleep more, though it’s hard to imagine how she could sleep more than she has been. On the other hand, she seems to be dozing less and really sleeping more.
Mieshelle leaves tomorrow and Adam leaves on Thursday. Linda will come tomorrow for a short time. I like not being alone. I like visitors coming here.

I am grateful for Adam’s three-week stay. He’s been invaluable in the kitchen and at night, and has helped me with hosting when people visit. On their way out, he thanks them for coming. I’m grateful that Mieshelle’s visit turned out so well. She’s been great with Mom, pleasant with Adam and everyone else, and I’ve felt a sweet affection for her.

I’m grateful for Berle and Silke and Peggie, for Karla and Monika and Inge, for Jayne and Will Kay and Lynn, for Gregory and Annika, for all the people who comment on Facebook.

Tuesday  November 18, 2014

Mom does seem to have been sleeping a lot since her base dose of the painkiller was increased. This is a mixed blessing. She may be in less pain in spite of being unable to remember how to use her bolus to deliver painkiller, but she is not conscious to us. Her ability to perform that most basic of human tasks, that of being present, has been taken away from her, and from those who love her.

I have been grieving this for some time, but I can also tell that I’m just a bit numbed by it all. How else to explain that I’m reacting as if my mother not being present, and dying, is just the way things are. This is what I mean by having settled into a rhythm. There is nothing else to do when you’re waiting.

* * *

Carrie and Laurel arrive from Grand Junction. Carrie has impulsively moved to Nebraska and is back in the area for a few weeks.

“That’s where Mom and Muschi got their start,” I say. “One of the first places they lived in the early 1960s was Omaha.”

“Don’t tell them that!” Mom says, coming to life. “That shows them how stupid I can be.”

“What’s stupid about that?” Mieshelle asks.

“That really changed my life,” Mom says.

* * *

“Is that your ring? Let me see it.” Laurel was married recently.

Laurel shows her the ring.

“Tell him you lost it,” Mom murmurs, “and to buy you a bigger one.”

* * *

 

Mieshelle and I talked quite a bit this morning. I hung out at the bathroom door while she

Mom Applies Lipstick

Mom Applies Lipstick

 

put on makeup. I thought of telling her that I missed having a connection with her, but I didn’t see the right opportunity and figured I’d do it at the airport. In the living room, Mieshelle wanted pictures of herself with Mom and of herself, Adam, and I with Mom. She applied makeup and lipstick to Mom. Mom wanted to put a different lipstick on, and to put it on herself. “It’s a girl thing,” she said. She looked at herself in the smartphone Mieshelle was holding out for her. Mom took the phone.2014-11-19 08.35.59

“My God,” she said. “ Who is that person?”

Before she left, Mieshelle went to hug Mom. Mieshelle was crying a little.2014-11-19 00.25.52

“It’s not over,” Mom said.

I couldn’t see Mom’s face, but as Mieshelle continued to say goodbye Mom said, as she had with Muschi, “Just go.”

* * *

Mieshelle and I got in Mom’s car and drove toward the airport. On the way there, I said to her, “It was really comforting and healing to have you around.”

“Oh, really?” she said. “That’s so nice. I’m glad.”

“I think I re-remembered how much it hurt me not to have any kind of relationship with you, and I feel like I want to keep some connection.”

“I feel the same way,” she said.

I ordered some chai latte that was light on the real chai and had no latte. To be candid, it was the worst chai that has ever been made on this planet in the history of humankind. We sat and talked for a bit and then we hugged in front of the security ropes. I kissed her on the cheek.

“I’m serious,” she said. “If you want to talk to anyone, you just have to say so.”

As I drove out, I felt the bittersweetness of spending positive, caring, affectionate time with her, and feeling supported in my journey with my mom, as well as sadness about the losses we both endured when we split up.

* * *

Carrie was asked what were the best things about the Camino for her. She thought for a second. “Inge, of course,” she said. “That woman has just inspired me so much.” Her eyes were red. At one point I saw her and Mom both gazing into each other’s eyes, and caressing each other’s faces.2014-11-18 11.28.37

 

 

 

 

 

2014-11-18 11.35.23I do some work and then come out to kiss her head and stroke her hair. “My cousin!” she says, maybe trying to make a joke. “My son,” she says more softly. She pulls me down into a hug.

I see her smile again. “You’re really smiling a lot more these days,” I say.

She begins to cry.

“What? What is it?”

She waves her hand in front of her mouth as if to dissipate the tears from her tight throat. At length she says, “I have such good friends.”

“Awww, of course you do. And you have friends who live in other places and have never met you who would love to be here with you. All kinds of people on Facebook saying Inge has been an inspiration to me and Inge helped me immensely when I lost my parent or was diagnosed and I always loved Inge for her posts with beautiful photos of nature first thing in the morning.”

“When you haven’t been worth anything,” she says quietly, “it’s really hard to believe.”

“Believe it, Mom. This is who you really are. It’s your old way of thinking of yourself versus how everyone else does. And you know they’re the ones who are right, don’t you?”

I tell her she’s so loved.

“It’s weird,” she says. “It feels fake.”

* * *

“This nice gentleman comes in every morning and says, ‘Coffee or tea, madam?’” She explains this to Linda, just arrived. She is probably talking about Adam, but I can’t be sure. Linda has called to check on my mother every day since her visit a week ago.

“Love you, Mom.”

She begins to cry.

“What’s wrong, Mom?”

“I just love you so much.”

Not Getting Better

Thursday November 13, 2014

Adam comes to my room to let me know my mother is pretty alert, so I get up and go to her. After we have been talking for a while, she says, “I need something that’s going to give me hope. I manufacture it at night. There’s not any left, and I’m not getting better. Can somebody tell me something that will give me hope?” I just listen. It’s really hard not to offer her comfort when she cries, and when she’s so clearly in despair.

She wants to call her cousin Renate, who has been like a close sister to my mother. “I’d never forgive myself if I didn’t at least try,” she said, tearfully. So I call Mom’s sister, Christa, to get a number for Renate’s hospice.

“Tell her things are going fine here,” Mom says, “so she’s not so freaked out.” I think, I can’t tell her that. “Tell her I have a cough so I can’t talk,” Mom says. But Christa doesn’t answer so I leave a message. She calls back moments later, and after I ask her if she has Renate’s phone number, she explains that it’s not possible to call Renate, who is not doing very well at all. Mom can hear Christa’s voice coming out of the phone and begins to cry.

“This wasn’t supposed to happen like this,” Mom says. “We were going to end up in Iziba” – she means Ibiza, a Spanish resort island – “on the Strand, to make up for the crappy life we had before.”

At this she weeps again. I look at her, thinking this has been my worst fear, that she might die without having felt she lived a good life. A few months ago, when I first expressed that fear to her, she assured me that since her recovery from ovarian cancer in 2001, she has been “content, very content.” Now I’m not sure I can be comforted by that anymore.

“I can’t believe she’s going to leave without saying goodbye,” Mom says.

* * *

“I don’t like that phone,” she says, “I need to take it back.” She’s said this about her brand-new Samsung Galaxy S a few times in recent days, another clear sign that she thinks she’ll live long enough for it to matter.

I want to spare her the psychological pain of accepting that she is dying. The rallying cry of the codependent. But I’ve always struggled with those boundaries – how much must I suffer in order that my mother not suffer? Here, there is nothing I can do. This journey toward acceptance and peace is her last camino, and the prizes the greatest she’ll have ever won.

* * *

I wondered yesterday if I wouldn’t be hearing from my sister about a return visit.

* * *

The hospice chaplain comes at one o’clock. He’d called earlier to see if it was okay, and I’d said yes without asking Mom. I hoped he’d engage her in a conversation about the end, and he did gamely try to do so. At his invitation, she begins to recount things that give her joy – the clouds in the sky with their shapes – and then she cries. It’s about Renate, who might die today, she says.

The chaplain later tells me that he tried to engage her in an end-of-life discussion, “but she wasn’t going there.”

* * *

The rest of the afternoon and evening passed without much incident. Silke visited and rubbed Mom’s feet. Mom was asleep most of the time, but she did break down and cry to Silke about something I wasn’t privy to. She cried more than once today. Sometimes she’d say she was sad about Renate, and sometimes she wouldn’t say or I wouldn’t ask, and I’d wonder if she was crying because she knew or feared she was going to die.

I can see the immense comfort of a belief in life after death. All this fear, transformed, in small or large part, into hope for a beautiful adventure of some kind. I don’t know what Mom’s views on the matter are, exactly, though I have my speculations. I haven’t asked her about her views of life after death because I may as well ask if she knows we think she’s dying. It’s premature, and would only distress her.

* * *

She looks at the furniture in front of her – the dining room table, the shelving, the TV cabinet – as if seeing it for the first time. “How did all of this get in here?” she asks.

“You brought all this in here, Mom. It’s all in your house.”

“Is it in the same location?” she murmurs, though it takes me a while to understand her.

“Yes,” Adam says. “It’s the same location.”

Friday November 14, 2014

Adam got up at around 2a.m., and I went to bed about a half an hour later. In the middle, I helped Mom into the bathroom and back and Adam helped me tuck her in.

In the morning I go to her as soon as I come out of my room. “I almost went crap outside the bowl,” she says. I move her portable commode out of the bathroom and closer to her hospital bed.

* * *

I hear Mom talking to the hospice assistant. She is saying something about not being at home. The hospice assistant tells my mother that she is, in fact, at home. The next time I check on Mom, the assistant is making up her bed and Mom is sitting on her portable commode with her legs covered. She moans a few times and the hospice assistant tells me Mom is complaining of bladder pain.

“I’m so sad,” she says.

“What are you sad about, Mom?”

“Renate,” she says. “This.” Here she gestures toward her condition. “I just wish I knew,” she says. In her much-reduced voice there is overwhelming sadness.

“You wish you knew about Renate?”

She nods. “I just want to be able to say goodbye. Say thank you.”

“She knows you’re thankful, Mom.”

“I know,” she says. Irritably. “It’s not about her.”

* * *

“When is Candy coming?” she asks.

“I’m not sure,” I say. Candy had texted me yesterday to check in, but hadn’t answered my question about whether she wanted to come back.

About ten minutes later, she says, “Did Candy call?”

“She texted me a little while ago,” I say. “She’s still seeing if she can get permission to leave.” I do not know this to be true.

Mom tears up. “I don’t want her to have problems. She doesn’t have to prove her love. I remember what it was like being a single mom.”

* * *

“There’s gotta be something I’m worth it to eat,” Mom says, or something like that.

Worth?  “You’re worth plenty, Mom.”

“I just haven’t eaten in five days,” she says.

* * *

Other times, what she says doesn’t make much sense. And five minutes ago, she gestured toward “the golden thing on the table”. For some reason she had me fetch the small sculpture so that she could examine it.

* * *

“How long have we been here, in this house together?”

“You’ve been here eleven years.”

“I mean this time.”

“About two and a half weeks.”

Her eyebrows go up. She whispers. “That long?”

“Yes.”

She gazes off to her right for a while. “Was I in a coma?” she asks.

* * *

She reaches for my hand. I’m sitting on the couch, but I get down on the floor next to her bed and take her hand. “Hands across time,” she intones. “Your hands were so fat and cute.”

“You’re my favorite,” I tell her.

She smiles. I turn her hand over and lift it up to my lips. I tell her I need to get on one of the business calls I’m somehow able to keep doing. I remind her where to find the bolus of the medication pump. She grips it in her hand and raises it to her mouth, as if it’s her glass pipe.

* * *

I am leaning down to press my face against hers. I breathe in her soft grey and white hair. In her small, girlish, trusting voice, she says, “Am I getting any better?”

“Are you what?” I say, not sure I’ve heard her, or maybe I’m just terrified of where it’s going.

“Am I getting better?”

Breathe.

“No, Mom,” I say.  “I don’t think it’s getting better.”

Her eyes fill with tears and her face is a mirror of pain. She puts her hands over her face and begins to shake with weeping. She begins to keen. I am beside myself.

“I wish someone could tell me something,” she says.

“Do you want to see a doctor?”

“No, because then I would know for sure,” she says. “We don’t know what it is.”

“We know the cancer is spreading, Mom. We know there are certain signs, like the fact that you can’t eat, or your confusion.”

She cries again, ripping the flesh of my heart. Is this not just the worst conversation I have ever had?

After a while she says, “I think I knew a while ago. You just have a feeling about your own body.”

“You mean when you felt something was different, in the last few weeks, and months?”

She nods.

“You did everything right,” I say. “You have been a true warrior in every sense. And you touched and inspired so many people.”

“They used to say that when I was five,” she says.

“Say what, Mom?”

“Say I inspired them. I never understood it.”

“We’ll always be connected, Mom.”

“I know,” she says.

* * *

“I don’t know how I’m going to live without you,” she says, and she begins to shake again.
A little later, she asks her friend Inge, who is older than Mom, “When you die too are you going to come find me?”

* * *

“Am I getting better?” I don’t see myself forgetting that. In that small, pitiful voice. And how vulnerably she simply accepted my answer, like a child.

For a man whose mommy issues revolve around his desire for her to be happy, there is no test like breaking the news that there is no hope, that she is dying.

* * *

Adam and I come back from almost two hours at the local Starbucks, where I distracted myself from the heart-ripping conversation I just had with my mother. Inge and Monika have been watching over Mom in our absence, and they hug us and leave soon after. I sit down on the couch next to Mom’s hospital bed.

“Gregory knows,” she says, referring to the boy she nannied for years, and who loves her like a grandmother.

“Knows what, Mom?”

“That I’m dying,” she says.

Ah.

That’s the first time she’s said those words.

* * *

I don’t think I’ve had any experience more alien than looking at my mother, watching her sleep, hearing her breathe – and trying to grapple with the reality that in a very short while, she will no longer be lying there, no longer be in this house. Knowing that there’s nothing I can do about it – a few more days like this, maybe a week, and she won’t even be sleeping quietly in a hospital bed. She will cease to exist! How to wrap one’s head around that? I’m anxious about being in this house with nothing but memories, ghosts, of her. This is her house. She fixed it up and filled it up with memories and I can’t imagine her not alive in it. I worry about how alone I will feel. I’ve had one parent all my life; what will I do with her gone? When cooking or food comes up, I’ll think of her, want to share, and remember with a start that I can’t call her up any time I want. She once told me she experienced this when she thought of calling up Oma. When I travel, I’ll think of how much she would have liked to come. When I see nature, I’ll remember her appreciation and wonder, and her gratitude.

There will be a mom-sized hole in the world, and I can’t even begin to imagine all the ways my life will be different because of it.

* * *

Berle writes me a lengthy text full of the usual love and generosity.  In part of it, she explains that my mother recently translated the German book Perlen des Lebens for her and Peggie.  The way your Mom translated that book is a cherished memory Peggie and I will never forget. It was as though she could feel God’s presence while reading it to us which brought about some wonderful, emotional conversations. Your mom has been blessed in many ways, but mostly by having you.

At the end she writes, She is always in my thoughts and prayers and I know there’s a fabulous kitchen awaiting her in heaven.

* * *

It’s around 8 o’clock and Mom is dozing in and out, mostly out. The medication pump keeps beeping, annoying both of us. While I put in a new battery I hear her talking in her sleep. I can’t make out what she’s saying. A minute later she spots my vaporizer with one eye opened about twenty percent and the other ten, and she asks for something.

“You want what?”

“Weed!” she bellows.

I clean out the charred material in the bowl of the glass pipe and add some fresh indica. I hold the lighter over the bowl and she inhales. And once more. And without further ado she says, “Good night, my beloved son” and closes her eyes.

Saturday November 15, 2014

Last night. She asks me to join her on the hospital bed. I hold her hand until both of us fall asleep. I wake up at about 1:30a.m. Mom has forgotten how to use her pain pump, so I sleep on the couch and wake up to administer doses whenever I hear her groan. At about 6a.m., Adam wakes and I go to my bed in the bedroom to sleep until 9.

Adam says she cried a lot in the night. “She was sobbing. She said, ‘There are so many books I haven’t read.'”

* * *

Morning. She looks around her without comprehension. “I keep being puzzled by all my stuff.”

“What puzzles you?”

“That it’s here. Because I don’t know how it all got here. I don’t know how I got here.”

“From where?”

She shrugged. “From hospice, wherever.”

“Well your stuff is here because you’re in your home. Your little house. You’re where you want to be. And hospice has been coming here.”

“How long have I been here?”

“You’ve been here the whole time.”

“I’m hungry,” she says. Eventually she chooses toast with butter and jam. As I’m getting up to go to the kitchen, she says, “If we’re this close to Erlangen, why can’t I have sauerbraten?” Erlangen is her hometown in Germany.

I just lean down and kiss her forehead. I’ll never have her sauerbraten again either.

* * *

She wants a pastry. She has told friends she wants pastry for over a week, and they keep bringing pastries that no one eats. But she says she wants something with “some nice cheese on it,” so I pull on a coat and walk to a nearby bakery. I walk past the stores we used to shop in, past the consignment store that put our proceeds toward hospice care, past the salon from which a stylist came to my mother’s home a few weeks ago to do her hair, and wouldn’t take payment. This town, which my mother came to for a relationship, and which she stayed in partly because she didn’t see much evidence of my settling down anywhere else, is filled with my mother.

I don’t want to be here after it happens. I don’t want to be among all these memories. I want to be far away.

* * *

She cries about leaving us.

“We’ll always be connected, Mom. Always be together.” Remembering that yesterday she asked her friend Inge if she would come and find her, I say, “We’ll be together in no time. I’ll come and find you.”

She comes out of the frozenness of her sadness and says, “You better bring some good Camino shoes.”

Berle and I laugh with her.

“Look at that smile,” I say, and I kiss her cheek and her forehead.

“You take such good care of me.”

“That’s because you’ve always taken such good care of me, Mom.”

* * *

She tells Berle that her body has betrayed her. Berle’s face is all empathy. She makes sympathetic noises. I don’t really know what to say, so I say, “Your spirit is still untouched, Mom. That body is just a vessel.”  Berle agrees.

“I wish my spirit could take my body for a walk,” Mom says.

* * *

She complains to Berle that she woke up at 5:30am and didn’t know where she was. Someone should have explained where she was so it wasn’t such a surprise, she says. She is crying.

I’ve never been able to withstand the sight of my mother crying, but when she’s crying because she knows she’s dying, because she fears losing us, I am utterly stricken.

This unspeakable sadness.

* * *

Berle and Silke are here. They rub Mom’s feet and reassure her. She cries, as she has been crying since I told her she was not getting better. I can’t even imagine what she feels, knowing the end is near. How can she not be crying in every waking moment?

I look at her in her hospital bed, usually sleeping, and my brain seizes up while trying to imagine her not being there in a week, the bed empty, the house quiet. There she is, breathing. Huggable. But next week?

Time is running out. What to do? How to make the most of her time? Should I be reading to her? Making her laugh? Reminiscing? I’m afraid I provide no entertainment, no comfort other than the constant attention I give her. I can’t keep my hands off her head, her shoulder, her face. I kiss her every other time I pass by. I fly to her when she cries. Of course she did all this for me, once upon a time.

* * *

Via text Mieshelle tells me that our beloved Great Dane, Jazzy, is being euthanized this evening. She lived longer than average, maybe ten or eleven years. But like Uncle Horst’s death and Renate’s dying, I am not nearly as affected by Jazzy’s death as I would be if I had been there. Or maybe I just have nothing left in the grief tank.

* * *

The morning rivers of sadness fade to a trickle in the evenings. Tonight Mom sleeps. Adam sleeps. Oma and Opa’s ancient clock sits atop the heirloom buffet and audibly counts down the seconds. They are slipping away, 3600 every hour, for several hundred more hours. They will be up before I know it. The heaters blow white noise. It’s not even eight.

The last party

The last party

Not Enough World and Not Enough Time

November 10, 2014  Cont’d

6:55p.m. Today felt a bit more blah than yesterday. Aggravation with landlord. Mom’s complaints and my telling her she sounds like an ingrate. “Oh, kick me when I’m down,” she said. “I’m not kicking you,” I said. “I’m holding you accountable: I don’t deserve this. I know you’re angry but please find something else to take it out on.”

I was in another room when she called my name. “What?” I said.

“Are you upset with me?”

Was I? No. Wouldn’t be good to say yes even if I was. “No.” I walked into the living room. “I just want you to be mindful of the people around you. We’re on your side.”

* * *

Five minutes ago may have marked the first time since this crisis began that I found myself wondering how I could endure. And I think the reason I wondered that is that I first noticed how Mom can still move her legs, still stand with help and for a little while, and it occurred to me that we could be doing this for weeks, months. Can I do this that long?

I need to settle into a rhythm, and to have no attachments. If we must both suffer longer, then suffer we shall. There is no getting out of it.

But I also feel fear. I imagine how much she will suffer when she loses the use of her legs. And when would she no longer be able to eat? The hospice nurse said last week that Mom would only be able to keep down broth, but she’s still eating. Though not much today. Yesterday was relatively abundant eating for her, but today was light. Vomited twice this morning. My theory is that it had been almost six hours since her last Ativan when she hit her pain pump twice in a row and drank some coffee. I thought of these additional steps, each a descent into the hell that can exist on earth.

I brought her coffee.  “Oh, small pleasures,” she said. She would later tell Berle and Adam, with half-joking amazement, “My son made me a perfect cup of coffee this morning.” And this in spite of the fact that I had not known about her habit of pouring hot water in the mug so that the mug doesn’t cool off the coffee. Mom likes everything hot. I can’t remember if she was always like that and I just didn’t notice, or if this is a new thing. But everything we bring her should be near boiling.

The tenderest moment I will have ever shared with my mother happens when I hug her gently up off her bed. She is so light, so fragile and vulnerable, and she reaches her hands over my shoulders and around my neck, so that I am at once supporting the weight of her and gently hugging her to pick her up. As we start moving she puts the top of her head against my chest and holds on tight. We walk in a shuffling minuet to another part of the house.

November 11, 2014

It’s a little after 10a.m. and Mom is still sleeping. She’s sleeping more and more, it seems. It may not be a coincidence that I am playing my music in the house for the first time since I got here. I also spent some time decluttering my bedroom and the living room, and moved her music system, which she can no longer bear to use, into my closet. This frees up room for Adam’s things, which are stored in the living room.

Mieshelle, my former wife, is arriving on Sunday afternoon. “How do you feel about that?” Adam asked, like a psychotherapist. I shrug. “It’s fine. She may get more out of it than Mom, but that’s fine too.” Maybe I will take a few days’ break in Telluride while she – and the next day, Linda – is here. Nah, I shouldn’t.

Gratitude. I am so grateful that Adam came back. I feel badly that he is spending so much time here, in this dark, crowded, cluttered little house in a town of little interest to him. But when I gave him an out to spend less time here – “I think this could go on for weeks or longer,” I told him – he said that he had nothing else to do and could work from anywhere. I’m grateful that my friend and colleague Mark Kozak has been doing such great work for our differential diagnosis startup.

She sleeps until after ten, which is unheard of. When she wakes up she begins to vomit up her coffee along with bile. Adam and I tend to her, wiping her mouth and nose, holding her bag, holding her up. She is shivering. She says, “I’m going to starve to death.”

“You’ve always come back and started eating again, Mom,” I say. But the last forty-eight hours have seen her eat very little, and she’s vomited up her beloved coffee two days in a row.

I haven’t heard from Candy about her idea of switching work shifts with coworkers. I wonder if this means she will make a decision simply by not taking action.

* * *

At a little after noon she asked for some Savoy cabbage. Whatever that was, we had none. I made her some salad, but it was “too rough”. The watermelon was too sweet. She didn’t want chicken noodle soup, and when I persuaded her to have some she complained that it had nutmeg in it, but she did eat some noodles. Shortly after, she asked me how to give herself a dose on her pain pump. “I forgot how,” she said, rooting around on the machine end rather than the end with the bolus.

She has slept most of the day so far. It’s a little after 2p.m.

At about 2:30 the hospice nurse Suzanne dropped by. She had called earlier to tell us to put a numbing cream on the chest area around Mom’s port so that a new needle could be put in. We found the cream and let Mom do it herself without supervision. Suzanne came into the kitchen where I was getting something to eat.

“I wanted to – I’m sorry, I shouldn’t laugh, but she’s just so cute. Your mom put the cream on her nipple. Which has nothing to do with where the port needs to go. I think we’ve reached another milestone here.” I relayed to her how Mom hadn’t been able to find her pain bolus earlier. She nodded.

Back in the living room, I got Mom her Ativan and Suzanne handed her the water. Mom put the bottle to her mouth and began to drink. “No,” I said, “you need to put the Ativan in first.”

Suzanne gave me a look. I left the room to hide my tears from my mother.

* * *

Mom looked at me a little later. “Did someone steal a street in Germany or a book?”

* * *

Suzanne said, “With about two weeks in life, there’s a phenomena where the person gets bedsores all over and nothing on God’s green earth can prevent them.”

I find myself questioning whether that’s the wisest thing she can say in front of my mother.

I get on a business call for almost an hour and walk back into the living room. Mom has drunk a good bit of Berle’s goat milk, and Suzanne has got Adam and Berle in a huddle that elevates my anxiety. Now she turns to me. “Your mother said – and I know she might change her mind at any time – she said there are too many people coming in here. So she may be doing the final withdrawal we do in our lives, and you might want to consider limiting visitors.” She gives some specific suggestions, but I am still reeling from my mother’s impaired cognition today, and now from this mention of “final withdrawal”.

* * *

Bonnie comes by at around 4:30p.m. Mom is sleeping almost continuously. Bonnie will just sit with my mother, occupying the same room, for almost three hours.

* * *

Occasionally she will awaken to lift a hand uncertainly and murmur, Do we need to take a pill?

And I will say, No, Mom, we don’t need a pill yet. We just took the last one a little while ago.

Because that is what you do, with the dying. You give them every comfort you and others denied them in their lives. Death, as someone once wrote about a hanging, concentrates the mind, and I would add the heart. Suffering does the same. We just feel more. More than we normally do, or ever have, or maybe more than other people too. We are ablaze with feeling. With each feeling there is a thought. Sometimes the feeling comes first, and then thoughts about it, and sometimes the thought comes first and I feel: sadness – my mother is suffering and my mother is dying, are there sadder words in the English language? – and fear – I fear her losing her life, I fear her continued suffering, I fear being lonely, I fear being unable to function – and guilt and the fear of guilt – Why did I say that? Should I be thinking this? I hope I don’t feel guilty – and finally compassion, which means being willing to be sad for another person’s sadness.

And when I tell my mother no, we don’t need another pill, she is satisfied because she knows what’s happening. She feels control over something in her life and safe in knowing that we are doing our pills the right way, like a good girl. And she drifts off to sleep again.

* * *

As I write this at a few minutes to nine p.m., with my mother and Adam both slumbering, I am wondering, Am I ever going to see my mom again? Or was yesterday the last of anything familiar to me? I’m in a foreign country. Mom has said something like that a few times in recent months. It’s all foreign to me, too – losing so much, so quickly, being so surprised, and with such enormous stakes, losing sight of my mother in her descent (or ascent?) to another level of consciousness.

God, I hope she’s happy there.

* * *

She moans softly and I look to see her turning more on her side. She is facing me. “That’s good, Mom. You move just like that.” I don’t know if she can hear me, but I praise and reassure her just in case.

She hiccups. It sounds a little different now. I think it’s shorter now, more of a sharp high yip or even ip than the throatier uhuup she did for months.

I am going to miss that.

I have to stop writing to get up and answer the phone, where a woman begins a marketing pitch honed by the type of company I hope never to run, and I say, “It’s not a good time.” My voice still husky with tears, no doubt. I am hanging up the phone already when I hear her moving to the part of her flowchart where she asks if there’s a better time she could reach me.

I take a break. Read and answer email. Grow bored of what’s left. I read what commenters have said to my posts on Facebook, and Like them all. I hear my mother groan and realize she is reacting to the chainsaw that just started up in Adam’s nose. I invite Adam to go into Mom’s bedroom and shut the door. He goes to the kitchen. I read the Facebook comments to Mom and have to keep stopping to get ahold of my self.

She dozily awakens, eyes barely open, and asks for some hash. “You want some shatter hash?” I ask, to make sure she isn’t confusing hash with her usual leaf. She does. I’m in her room trying to scrape the glue-like substance out of its tiny plastic container and onto some leaf in the glass pipe when she says, “Do we have to go pick up anybody?”

Adam chooses one route – “No” – and I choose another – “Sure, Mom, we can pick up anyone you like.” Either way, her primal anxieties are quelled.

From a Facebook message from a stranger who has followed my mother’s posts for some time: She will have thousands of people lining up in heaven thanking her for what she has done.

Will this morning mark the last time I see my mother as she was, or will she, a morning person if there ever was one, rally again tomorrow morning?

* * *

She asks for orange juice. Adam has already bought a low-acid variety. While I massage her head, he explains that he hasn’t filled the cup all the way up, but there’s more if she wants it.

“You’re my favorite son,” she tells him.

We both start laughing, and I am delighted to see my mother’s face light up with a smile.

As I tuck her in and tell her I love her, she murmurs, “Don’t worry. You don’t have to worry.”

November 12, 2014

I hear my name. I haven’t been able to sleep since Adam’s coughing woke me up, so it doesn’t take me long to get to Mom’s side.

“I need to go to the bathroom,” she says.

When we return to the bed, she is exhausted. She is breathing hard. “Put your legs this way,” she says, pointing at the slice of bed beside her. “Help me get warm.” There isn’t room for putting my legs that way, so I sit down on the bed next to her. I pull the featherbed into her from the front and embrace her from behind.

“You need to call your cousin Renate,” she says. I say I will, ask if we have her current number. She thinks we do, but the last time she told me about Renate she said she had no number of the facility where she was being cared for.

I hug her some more.

She says something to the effect of “I always wanted to be close to you” or perhaps “I feel like I want to be close to you.” Then she adds, “Even when you roll your eyes at me.”

“Oh, Mom, I’m sorry.”

She shakes her head almost imperceptibly. “It’s all right. I do it too. It’s like a pre-conditioned thing.” She tells me I can go back to bed. “I’m not that selfish,” she says.

* * *

Sometime later, after trying to sleep, I go out again. She is sitting forward in her bed and there is a moist patch on her featherbed. I hold her again and press her pain pump. She seems to have forgotten that she can use it, which worries me. I make a note to check on her pain level more.

I’m concerned she’s not drinking enough fluids. But then, enough to what?

Cousin Fiona and Aunt Christa write (as Google Translate renders it):

With great concern we pursue Inge’s dramatic deterioration of their condition. As we have read, Candy is with you ?!
It sure is good and important for your mother, that you two are there and can give you all the love and help.
Our hearts are heavy and sad, but we can remotely only pray for you.
Unfortunately Renate state is equally dramatic, as the your mother.
One can hardly speak by phone with her. All this is a great psychological burden for us.
To see two of our closest and dearest relatives in such a serious condition and experience.

Teach your Mom please all love and warm greetings and embrace it for us.

Our thoughts are very much with you.
In love and embrace
Fiona and your aunt Christa

* * *

I walk up to Mom’s hospital bed and she says, in that slow, almost inaudible murmur, “It’s been a week.”

“What’s been a week?”

“Since I been here. Anybody have any ideas yet? Are we waiting for something?”

“We don’t have any new ideas, Mom.” I couldn’t even mention what we might be waiting for.

“I’m happy the nausea has improved,” she says.

“Me too, Mom.”

She looks stricken. “I’m so far from where I used to be.” She begins to cry. “It’s like the guy said, you better starting livin or get busy dyin, and this shit ain’t workin.”

“No, Mom. It’s not.”

We put our heads together, my right hand on the back of her head, and she cries and I cry in a way that I think she may not notice.

* * *

The hospice assistant seats Mom on a cold shower bench. Mom protests pitifully. Surely they learned a best practice around warming up the bench first? “I don’t want to do this,” I hear Mom say. She’s practically crying. When she gets back to her hospital bed, she’s cold and exhausted from the trip.

The hospice assistant, who has said she must be going soon, asks Mom to roll over onto her side.

“I don’t want to do any damn thing for five minutes,” Mom says. A few seconds later, she smiles that slow smile.

“I’ll stay as long as you need me,” the assistant says.

“No, five minutes was the limit,” Mom says firmly. We all laugh. Mom beams.

* * *

“I’m always here,” Mom tells Lynn on the phone. “I’m just stuck in some crevice.”

* * *

She is gazing toward the TV, which is off, and its cabinet.

“Do you see something?” I ask.

“Just for a second,” she says. “I saw two blips of a camino sign.” She gestured vaguely ahead of her.

“You mean the yellow arrow?”

“Yes,” she says.

* * *

I sometimes think of all the love I felt and did not show, and of all the love I felt and could not show.

* * *

I run errands. WalMart, City Market. When I walk through these places I feel at once heavy and like an open wound. I feel I’m in a race against time. Imagine someone shows up on your doorstep and says, “Your mother has a few days, a few weeks at most, to live. Good luck.” It’s like awaiting an execution, hurtling toward a death sentence. There isn’t enough time. Just as I wanted the future to come sooner when I was anxious to get divorced and move on, now I want to hold the future at bay. Not enough time.2014-11-12 12.28.20

 

I Did Everything Right

November 8, 2014

Last night I was sitting with Mom in bed when Mom asked Candy to join us too. Because she didn’t want to make Mom move over, Candy got herself into an uncomfortable position with one leg on the floor and one on the bed, so that we now sandwiched mom between us. I grasped Mom’s arm with one hand and leaned on her shoulder, while Candy rested an arm across Mom and held my wrist. We lay like that for a while. I fell asleep there, and didn’t wake up until about 1:30a.m., when I heard Mom groaning.
I reached for her medication bolus and clicked the button. Nothing.

I called hospice. “What’s her pain level?” the woman asked. “Scale of one to ten.” I relayed the question to Mom.

“Four-and-a-half,” Mom said.

My mother is a connoisseur of pain.

* * *

Mom slept from six to six on Thursday evening to Friday morning. Last night she slept beyond 8:30. Maybe it was the increased Ativan she took because I had her take another at 1:30am. Maybe it’s the progression of disease. Or maybe that, at her request, I stayed with her the whole night. I didn’t sleep well, woke up a lot, and when I did I often reached over to touch her back or shoulder or arm.

At a little after eight, she stirs, moans with pain — and then I feel her pulling the covers over me!

“Thanks for staying,” she says in the morning. “That was really nice.”

* * *

“What happened to this place?” she asks, not long after. “It’s a dump.”

“What’s a dump?” I ask.

“This,” she says, gesturing around her. “I used to have my coffee, all my medication in the right place, everything. It used to be a high-class place. Now it’s all gone to hell.”
Occasionally these complaints are accompanied by a slight smile, and I think I detect one here. It has become harder to tell when she’s joking. She never had a particularly dry sense of humor. In fact, she often laughed at her jokes, which was often a pretty reasonable indication that she was joking.

* * *

We are coming out of the bathroom. We move, when I don’t just pick her up, via my arms under hers at the armpit so that we are in a sort of hug. I then walk backwards, holding her medication pump, as she gamely takes small steps after me.

“Do you want to go back to your bed or out into the living room?” I ask.

“Go out,” she says. “Out. In the little time I have left, I want to go out.”

Could this be a new level of acceptance?

* * *

Afterward, she is tetchy, complaining about how Candy fixed her coffee and such.

* * *

It occurs to me that I have never seen such suffering as my mother’s, and it just goes on and on. Every day a grueling affair. I’m not exercising enough.

* * *

Mom wanted spaghetti twice today. She ate several forkfuls of it, some of them enormous. Over a half an hour later, she wanted more. “A little less al dente,” she said. She ate with her eyes closed. Is that the Ativan, now at a half a milligram every two hours instead of three?

I’m sad that Candy is leaving. In less than half an hour. I’m sad for Mom, too, and I dread the clock striking noon, when Candy must go. Several people have offered frequent flyer miles for her, and she says she might be able to get more time off soon. Perhaps she can come back.

I ask Berle to come at around the same time Candy would be leaving. Peggie comes too, though she is teaching riding lessons all day and can only stay half an hour.

“You’re cooking now!” Peggie says.

I laugh. “I’m boiling.”

“You’re doing an amazing job,” she says. She gives me a hug. “You’re not going to regret anything.” She tells me about losing her own mother, 19 years ago – her mother had complained of flu-like symptoms and the doctor she went to failed to diagnose a heart attack – something that would not have happened if the doctor were using the algorithm built by my company, Physician Cognition. She was dead within hours.

“So you’re not going to regret anything. Candy might, but you won’t.”

“I will regret one thing,” I say.

“What’s that?”

“That I didn’t or wasn’t able to make the time to learn to cook from her. That would have allowed me to cook the food she likes during this time, and to honor her legacy and feel connected to her far into the future, when my memories of her will recede into the past.”

* * *

Two of my five surviving ribald aunts on the Powell side, Jayne and Willa Kay, arrive from Rangely. Willa Kay ribs my Mom. She teases her, treats her like she’s not sick. It’s nice to see.

“I have just been overwhelmed by everybody’s outpouring and kindness,” Mom says.

I feel good about this. Unrealistic though it may be, I want her to feel only love at the end.

* * *

Mom has a hankering for shrimp. She knows there are some still in the freezer. First she wants the shrimp with something and cilantro, but she soon changes her mind and asks for a salad. And a mayonnaise and olive oil dressing, along with cilantro. “Mayonnaise and olive oil?” I say to Willa Kay. “Have you ever heard of such a thing?” She admits she hasn’t. I wonder if Mom is not thinking clearly, but Willa Kay makes the dressing as instructed and Mom pronounces her whole salad very good.

“How is it?” Willa Kay says, returning from the kitchen. “That gonna make a turd?”

This breaks me up. This is the sort of thing her mother, Gramma Powell, would say. My mother has been channeling her irascibility and profaneness lately too. Mom later refers to her glass marijuana pipe as a “flying penis”.

“Well, now that you mention it,” Jayne says, and could have been speaking for all of us.

* * *

She is telling a story and Willa Kay asks when it took place. Mom says, referring to me, “That’s when he was pregnant with me.”

“Oh, that must have hurt,” Jayne says, looking at me.

* * *

It is a quarter after six, well past five o’clock, when Jayne and Willa Kay had said they needed to leave. “We’ve had a lot of good times, haven’t we, Inge? And we’re gonna have some more.”

Mom is crying.

“How ‘bout if I come back and do up your fingernails and your hair for you? Wouldn’t that be nice?”

Mom mumbled that it would be nice.

“Jayne and I were talking about getting down here, and I finally just said we gotta git. I’m so glad we came. So you could cheer us up.”

For a good ten minutes, Willa Kay strokes my mother’s hair. She is very tender with her.

“You were kinda chubby the last time I saw you,” my aunt says. This was June 2010, when Willa Kay gave my mother a book on organic and macrobiotic eating that catalyzed a dramatic change in my mother’s diet. “Can’t say that now, can you?”
Willa Kay asks Mom what color of fingernail polish she wants.

“Teal,” Mom says.

“Teal?”

“It’s the color used to signify ovarian cancer,” I explain. “Mom’s a member of the Teal Warriors Facebook group. It’s for survivors and caregivers.  I’m a member too.”

* * *

I come in from the kitchen with Mom’s ginger tea and I see Jayne stretched out across Mom and hugging her close, their heads touching. I see the tears in my aunt’s eyes and I am moved. “I love you so much, Inge,” she says, and now I have tears in my eyes.

I see Jayne and Willa Kay out to their truck. I am so thankful they came, and so grateful for the love they showed my mother. They repeat that they will come back. I say they should try to come back in the next week or two.

Jayne and Willa Kay are gone. “They brought a wonderful energy here,” I say to Mom.” I wish they could stay here for the duration. “Boy, for how little we get to see one another, Willa Kay sure is fond of us, isn’t she?”

“Yes,” Mom says. “I was surprised. Very nice.”

* * *

Mom wants the marijuana cream to put on her bedsore.

“Do you want me to keep the bed up or put it down?” I ask

“No, I’m gonna go to bed and read,” she says. “I need a little of my” – she waves a hand, which is out looking for the right word – “my routine. Take my teeth out, brush my teeth, get my oil.”

So we go through this routine. She has difficulty getting out of her hospital bed, but she still manages it. She can’t walk on her own, but if you put your arms under hers she will hold herself up and even move her feet. We walk the lengthy, exhausting camino out of the hospital bed and through the living room, across her bedroom and through another too-thin door into the bathroom. We pull her pajamas down and she sits down and I stand there because I’ve got the IV drip wrapped complicatedly around my neck. “Do you want me to leave you alone?” No. She is done.

She stands up with my help and brushes her teeth. She can stand on her own with something to hold onto or lean on. She drops the cap of the tube of toothpaste into the removable mesh filter that fits into the drain. She fumbles with the cap, trying in vain to pull it out, and I say, “Here, let me get it,” and I pull out the mesh filter, turn it upside down so the cap falls out into my other hand, and put the filter back. Is this her cognition now?

I give her half an Ativan and her cannabis oil – which she still takes, doggedly, in spite of its demonstrated inability to reverse at least her particular cancer – and then I ask, “Do you want some of your marijuana to smoke, Mom?”

She nods. “I just don’t give a shit,” she says, in that quietened, weaker voice she now speaks in. “And I want something that will enhance that feeling.”

“Enhance what, Mom?”

“Not giving a shit. I want to enhance that.”

And so we do.

* * *

I’m not feeling as depressed in the mornings. It’s no picnic, but it’s not the same heaviness I felt last week. I can still be moved to tears in a few thoughts or images, a few words spoken or actions taken.

But I am not feeling as much sadness as before. I am aware that doesn’t at all mean I’m beyond it. I’ve just moved into a different place. I’m still more likely than my sister to get tears in my eyes. Who knew I was so sentimental? But then I have lived a different story from my sister for the last few years I’ve spent with Mom. I’ve lived a story with Mom, and we’ve striven for the ending that for both of us was the only acceptable ending to the story.

* * *

I find that thinking about the aftermath is not something I should let myself do. It’s too overwhelming. And being right here, now, has been the best way not to think about my fear of depression afterward, and inability to work, or my sadness, or what I will do with the house and everything in it, or whether I should still plan to spend the winter in Telluride, as I did just a week before she started to go downhill so quickly, a week when I still thought we might get through the winter and even make it to her next birthday, May 31, 2015, and the last day of the lease.

A summary of the day I sent to my friend Grace via FB Messenger:

Me:  Mom is sleeping a lot more, and grappling with her fear and her anger that she “did everything right” and it didn’t work, but she’s not vomiting and in little pain

Grace: I wish for her to find peace in all this.

Me: yes, I fervently do. Maybe too much so. I need to be prepared for her going while angry and feeling betrayed by the universe

Grace: You have such a beautiful connection to her…

Me: It’s rarely felt that way before, but it’s good to feel now

Grace: I understand. I also understand her anger and feeling that the universe has betrayed her.

It makes sense that I’m not feeling as betrayed and shocked as my mother. No one could generate more hope for her health and survival than she herself has. Hope about organic food and smart eating, hope about the Gerson Method, hope about a long walk on an ancient pilgrimage, hope about chemotherapy, and above all, hope about cannabis oil. The oil, she believed for a long time, would save her.

How do you stay alive when you’ve abandoned all hope? Or it’s abandoned you. Maybe she has hope that something, something currently unpredictable and unnamable, will reverse this slide.

* * *

I hear my mother moaning while half-asleep. I walk in and ask if she wants to hit her painkiller pump. After I press the magic button, I put my face against hers.

“I’m sorry it’s been so hard, son,” she murmurs.

“Don’t worry about me,” I say. “I’ve been given this amazing opportunity to show love for you every day, all the time. It’s been really wonderful.”

* * *

Candy arrives back at her home in Alabama at around 9:35p.m. Mountain. She texts me as much and says I love you. I text that I love her, and that I am so glad she came. I finish watching “Belle,” which is better than I’d hoped. I write my friend and colleague Mark, in part:  I’m giving some thought to what I’ll do after Mom passes. I have a lease [in Telluride] until the end of May, but I may consider, when the time comes, relocating to Boulder in order to do a lot more networking [for the startup].

It’s 10:20p.m. and I can hear my mother hiccupping. The drawn in-breath, the high volume, higher and more forceful these days than her speech. Will I always be reminded of her suffering, every time I hear someone hiccup?

* * *

November 9, 2014

Vikki is one of the many people who barely know me or don’t know me at all but who have written with support:

I know you are having a tough time of it. Thinking of you and wishing there was something I could do to help from SC. If there is, please let me know and I will do it.

Hi Vikki. Thanks so much for reaching out. Especially since we don’t know one another very well, I’m touched by your compassion and generosity. All people can do from afar is what you are already doing. It’s also very therapeutic to blog and to hear from people about what I’ve written. It’s all less surreal than last week, but I’m still a bit disoriented at the suddenness, as is my mother. She’s surprised, shocked, feels betrayed and angry, desperately wants more time with my sister and me and others, and is scared. Those things weigh on me at least as much as her dying itself.

* * *

One commenter on the latest blog advised me not to try to delay my grieving. She said I wouldn’t be sorry. My friend Rivi told me not to feel guilty. A surprising number of people have written to say things along the lines of your writing is beautiful. I am touched and gratified, but I haven’t really understood it.

* * *

Briana Faith Powell, a cousin I have never met and who may have never met my mother, wrote on Facebook, “Drinking tea, thinking about Inge.” I cried.

* * *

10:15p.m. I am in the kitchen snacking while Mom sleeps. I hear something and walk into the living room to find her rooting around on the table that’s on the left side of her bed. It’s full of things and she’s searching around in the dark. I ask her what she needs and she says the pain pump – which has been on the right side all day, and is never on the table.
I go around and press the button for her. Then she wants to go to the bathroom, so the journey begins. On the way back she stops to catch her breath and says, “I need to find some water therapy or something.”

“Water therapy?”

“For my legs. I need to do something. I’m not going to just lie down here and die, no matter how [unintelligible] that would be.” She is crying.

“How what, Mom?”

“How gra-cious,” she says loudly, and now she is sobbing. I reach out to her. “Everybody keeps talking like it’s a done deal,” she says.

Indeed. A little earlier I had caught her crying – I thought she was crying because she didn’t want to die – and had said something about going to a beautiful place. I realize to my horror that my mother still thinks she can get better and I feel both sad and abashed for my presumption.

“I need an advocate,” she says. “Somebody to look into treatments.”

“What kind of treatments, Mom? We don’t know how to stop the cancer. Do you want to see a doctor? We can find out exactly what’s wrong with you and whether there are any treatments.”

She says that isn’t possible.

“It’s not about getting a treatment, Mom, so it won’t violate the hospice rules. It’s just seeing a doctor. You always have the right to do that. Do you want to see the doctor?”

I don’t remember her response, except that it wasn’t affirmative. She lies down on her side and cries some more. I kiss the top of her head.

“It would be wonderful if you got better,” I say. “That would be really great.”

I can’t give false hope. I can’t tell her that she will get better, or that we’ll find a way, or that it’s going to be all right. I haven’t said any of these things to her. Nor have any of her friends, now that I think of it. Not one. Under the circumstances, giving such hope would be unethical, even cruel. We simply have no evidence that this growing cancer can be stopped, especially now that chemotherapy, like surgery and radiation, is not an option, and the cannabis oil has, at best, merely slowed the progression of the disease.

* * *

Candy says, “I’m not worried about Mom, she’ll be okay. I’m worried about you.” And another time she says, “Are you going to be okay? You’re the one that will find out first. I worry about you.” I’m not used to my sister saying this sort of thing to me.

* * *

Mom is concerned about Candy and I dividing up assets, but Candy says we can handle it. “I’m not going to fight my brother over stuff,” she says. I promise Mom that we won’t fight about it. Later, in the living room, Candy says, “I’ll let you decide. You’re the one who paid for all this, who bought this house and helped her pay her rent. I’ll do whatever you want.”

That, too, surprises and impresses me.

* * *

November 10, 2014

She vomited at 5:30am this morning. My theory is that she had too little Ativan in her when she used her pain pump, twice, and drank some coffee. She was miserable.

“I don’t know how I got here,” she said.

“I know, Mom.”

“I don’t even know what I can do to get better.”

Oh, Mom.

She saw some vomit on her pant leg and she began to cry.

“It’s okay, Mom. We can clean it up. See?”

Later, when she saw that vomit was all down the front of her shirt, she began to sob. We went to the bathroom so that she could wash up.  I found her a new top and pants. When we got back to her hospital bed, she said, “I need to do something about depression. I think I’m getting depressed.”

“We can get you a prescription, Mom. But it’ll take about a month to work. Do you want me to call your doctor?”

She didn’t respond.

* * *

Close to 9am, she vomited again, but less forcefully and not for as long. Then she was cold and decided she wanted to take a hot bath earlier than planned (when Berle got here). “I think there’s not just one thing wrong with me,” she said.

We decide to watch Seth MacFarlane’s profane “A Million Ways to Die in the West”. She asks me to get into the hospital bed with her. She begins to cry. “I don’t want to go.”

“I know, Mom.”

“And that God the Father, I was always so afraid of him. I don’t want to see him.”

“That mean and uncompassionate God is a fairytale for children, Mom. There’s no such thing. No God worthy of the name is even less merciful and compassionate than humans. That God was invented by people with little godliness in them.”

“I know, it was just always beaten into me in Catholic school and Mass.”

“Whenever we go, Mom, it’s going to be to a place full of love.”

“I’m not ready to go now,” she says.

“I know, I’m just saying whenever it is that we do go.” I am making sure to use a generic “we”.

“I want to talk to the shaman,” she says, referring to a Native American she met a year or so ago. “I want to find out what Father Sky and Mother Earth say about all this.”

But I have called this shaman, Lance Little Wing, several times. I get only a busy signal, as if his phone isn’t working. I couldn’t find Lance Little Wing on the Internet. I’d never had occasion to think about it before, but if there’s one demographic I would expect to be the last to use the Internet, it would be shamans.

* * *

There are things my mother has said, or been through, that I know will haunt me.  Many times I know it instantly.  The sadness so sharp, what I feel for her on top of my own.

Ingelein, Germany, late 1940s

Ingelein, Germany, late 1940s

Days of Reckoning – and Waiting

2014-11-07 10.52.21

Candy wheels around our mother

For a little over a week after the rapid decline of my mother and her friends’ concerns brought me to my mother’s, I was in a state of shock – it all felt so surreal – and I felt a desperate urgency. I was on the verge of tears much of the time and I felt depressed, especially in the mornings. But now Mom is relatively stable. Greatly diminished in capability, without much quality of life, but she’s not getting visibly, or at least quickly, worse. We have slowed down, at least for now, into a grueling day by day of uncertainty and trepidation. And a lot of sleeping.

November 6, 2014

“Oh, you’re up!” she says. Her speech is a mumble, and not much above a whisper. “Took you long enough. What time is it?”

“Eight.”

“Oh, then you can go back to bed then.” She begins to sing. “You just called to say you love you.” A word was off and the tune was off. She sings it again.

“It’s ‘I just called to say I love you,’” I say. I sing it.

“That’s not the right tune,” she says. “It’s a country song.”

“It’s a Stevie Wonder song.”

She looks at me for a moment. “It’s a country song too. I think. Of course I can’t remember who it’s by.”

* * *

I’m on a client call but my ears prick up. Is my mother calling? Something doesn’t sound right. I open the bedroom door to see her vomiting into one of the blue bags we keep around. Meanwhile, my client wants to talk about his strategy for an interview with McKinsey & Co.

Afterward I come out to find that Mom’s old friend from Rangely, Linda Berry, has arrived to spend the day. Linda, who was a nurse for thirty years, is applying lotions to Mom’s back and straightening out the folds in her shirt to minimize bedsores.

Mom says to me, in her murmur, “Was Brianna here yesterday?”

I already dread answering her. Brianna is Mom’s granddaughter. She lives in Alabama.

“No,” I say. “She wasn’t here.”

Mom’s eyes fill up with tears.

“But you may have felt her here,” I say. “Or maybe you met her in a dream.”

“I’m losing it,” she says.

* * *

 

She is cold. I lay her featherbed on top of her blanket and lean down to add the heat of my body in an embrace.

“Do you need anything else, Mom?”

“What I want,” she says, her voice breaking, “I can’t have.”

I hesitate. Would it hurt to ask?

“What is it you want, Mom?”

“To get up,” she says, and now she is crying.

I lean down and cradle her head in my arms and put my face against hers. “I love you so much, Mom.”

“I’m sorry,” she says.

“For what, Mom?”

“Always on you,” she says.

* * *

 

Linda reminds Mom of some of their happy times. Going to the Sleepy Cat Ranch near Meeker for a fine dinner where “we were treated like ladies. So nice to live in Rangely and be treated like a lady.” And did we remember the time both women and their kids went up Dragon Road, above Rangely, to try to cut down a Christmas tree with an axe whose head fell off after every swing? Or the night, very late, when Mom had diarrhea and had run out of toilet paper, and neither one of them had enough gas in their cars to do any more than drive to work the next day, so they both set out walking and met halfway so Linda could hand my mother a roll of toilet paper.

“It was always amazing to me how she could just toss together such a wonderful meal,” Linda says. “It would take me all day and still wouldn’t be as good.”

They were both in Montrose together from 1987, when Mom arrived from Steamboat Springs four years after Linda, to 2002, when Linda moved back to Rangely.  After Mom’s divorce in the late 1990s, and before I bought her the house she now lives in, she bought a trailer.  “She bought that little trailer and she put it on a credit card, until a week later when she got a bank loan,” Linda says. “She always found a way. She was just so . . . and she still does, up to this very latest when she can’t do her own stuff. Very independent.”

This morning Mom’s abdomen was in great pain and she wanted to take a bath. I told her I had a coaching call and wouldn’t be able to help her out of the tub. She said, “I can get out. Independence is so important. Just being able to move a finger on my own.” She demonstrated the finger movement.

* * *

 

How did humans endure the end-stage ravages of cancer without painkillers? They must have been in such terrible pain that they’d just ask someone to kill them with a rock.

* * *

 

Where are all the men? It’s fascinating. Compassion, caretaking, and leave-taking must be women’s work.

Another day in which my depression is at bay. I wonder if my depression was being caused by my resistance, as well as the suddenness of it all, and whether now I have inevitably become more accepting of something that is no longer new, and that shows no signs of reversing itself.

* * *

I read about a study.  “Mass General study demonstrated the value of palliative care. Two groups of stage 4 lung cancer patients were given the standard oncology treatment, but one had a series of conversations with a palliative care specialist. The latter group chose fewer days in hospital, stopped chemotherapy sooner, went in hospice earlier and suffered less. They also lived 25 percent longer.”

* * *

 

At about 1:30, Mom asks for salad. Adam doesn’t think we should give her salad. Adam and I take forever to go out and buy it and prepare it, but when she puts the first forkful in her mouth, a smile spreads across her groggy features and she gives a thumbs-up.

The hospice nurse just can’t believe Mom is eating salad. She’d told her yesterday that she should have only clear broth until she hasn’t vomited for 24 hours. Salad is too rough, too hard to digest!  The nurse also tells Adam and me about the restlessness shown by people shortly before they die – lots of wants and needs, nothing satisfies. She says that’s the stage before the “transition” phase, wherein the patient comes to accept the reality of dying.  I feel my attention wandering away from the topic.

“But she’s not ready for that,” the nurse says. “Some people go quietly, and some fight tooth and nail. That’s your mother. She’s angry. She’s really pissed off. I would be too. So maybe she won’t be able to go with acceptance, maybe she will.”

It makes me indescribably sad to imagine Mom passing away while sad, angry, or afraid, rather than at peace. As I think about it, I realize I always assumed she would accept death before it comes. I pictured her patting my face, a weak smile on her own, and telling me it was all right, it was all going to be right.

* * *

 

I lean in to hug Mom.

“I haven’t seen you all day,” she murmurs. (Of course she has).  “Come here.”

We hug like that for a while. I pull away for a moment. “I’m so sorry this has all happened so fast. It must be very disorienting.”

She nods. “I’m not sure where to go from here.”

* * *

 

Mom says, “I keep thinking they’re going to tell me what to do. I think I’m being taken away.”

“By who, Mom?”

“Like kidnapping,” she says.

Oh my. Is this the confusion stage, which comes not long before death, or is this medication?

“I’m always asking where you are,” she says. “’Where’s Chris?” she said, using my old, and middle, name. “Where is he? I want to know where you are.”

* * *

 

“I know more about nutrition,” Mom says, defiantly, as some of us talk about what the hospice nurse said. Meanwhile, Linda says she learned long ago to give the patient what she wants.

* * *

 

She’s more groggy than usual, even less coherent or alert. I think she’s sleeping more, too. Whatever the cause, she sometimes asks childlike or confused questions, or makes non sequiturs. Again I wonder if this is the confusion phase, or she’s just medicated. But she’s no more medicated than in the past. She’s certainly not pressing her pain pump more, because we track that. Maybe it’s the confusion. ☹

* * *

 

Her eyes open. “Should I go to my bed now?”

“Sure, if you want to. Do you want to go now?”

She nods. Adam and I take all her things into the room, and then we support her weight as she sort of walks to her bed. She gets in and I begin to throw Oma’s wool blanket over her top sheet.

“I’m sad,” she says.

I pause and look at her. “I’m sad, too, Mom.” I climb up and hold onto her. “What are you sad about?”

She says something vague that I’ve forgotten.  Then she says something about money with X’s on it.

“Maybe that’s why I’m agitated,” she murmurs.

“Why, Mom?”

“Because I need to get to the money.”

* * *

 

“Do we have enough money for the cab?” she asks. It is as if she is relaying the content of her dreams in real-time.

Eyes closed, she lifts her left hand and wiggles it.

I say, “Plenty of money, Mom.”

She nods, satisfied.

* * *

 

She seems to be in more pain, and we press the button on the bolus more often. Somehow she has kept down the salad she ate.

She picks up the vaporizer pen in one hand and a lighter in the other. She seems on the verge of trying to light the pen, as if it were her glass pipe, when I take the lighter out of her hand. Another time, she seemed unsure which end of the glass pipe to put to her mouth.

She is confused. She is irritable – is that similar to being agitated? The hospice books say that confusion and agitation happen when the patient has one to two weeks to live.

* * *

 

Adam picked up Candy at the airport. I was on a conference call with my team at Physician Cognition.  Adam told me that when Candy went into the bedroom, he could tell that Mom knew who it was before she opened her eyes. Then she opened her eyes and they touched one another’s faces. I had wanted to be there to see them see one another again.

Candy says to me, “This doesn’t seem real.”

* * *

 

November 7, 2014

“It’s so surreal,” Mom says, “that we’re sitting here talking about death and dying.”

“It is surreal, Mom.  That’s exactly what it is.”

She begins to weep. It hurts me to see this kind of pain, such bald-faced fear and disorientation. I hold her head against my chest. “I know it’s all been so sudden, Mom. It’s happened very fast.” She presses her head against me. “But you’ve been so brave, and you’ve touched and inspired so many people.”

I think of one of my favorite pictures of her. It’s in brown and white. She is wearing a skirt, and she’s on a scooter. In this picture she always looked to me a little like Anne Frank – her age, her face, her hair, the optimism of her smile, her boundless humanity. Her hands are on the steering column of the scooter. She’s leaning forward, standing on one leg with the other pointed straight behind her. On her face a beatific expression, evidence of the capacity for joy so rare in the rest of her family. “What a life,” I say, “for that little girl from Erlangen.”

“I was always on the move,” she says, waving her hand slowly. “Couldn’t sit still.”

* * *

 

At other times she is still not coherent. There are the non sequiturs, the questions she knows the answer to. When we don’t hear her, and we say so, she is irritated and repeats herself, or shakes her head, with annoyance. In other words, the sort of thing I would do.

* * *

 

She wants to go out for a walk, so we three bundle her up and I carry her to her

Candy and Mom

Candy and Mom

wheelchair out front. We go to Main Street but she is cold and wants to go left for one block and then back home. She could already taste some hot tea. I did take some pictures of my mother and sister that I’m very fond of.

* * *

It broke my heart to see her just sob with the pain from her bedsore. Candy was already sitting on the bed near her. I once again cradled my mother’s head in my arms and told her how sorry I was, and how courageous she was. But then I found one of those donuts that air travelers put around their necks to help them sleep. I fitted it under her, with the open side pointing behind her, so that her tailbone area was suspended. She felt instantly better.

* * *

 

I find that I still don’t have bottomless reservoirs of patience with her, but I do have nearly continual compassion for her. I attend to her quickly, I coo and call her sweetheart, I hug her and kiss her and comfort her. I’m always asking if she needs anything. I move with alacrity, just as I once admired my friend Julio doing, seemingly for everyone he met on the Camino de Santiago. I have probably done more of all this for my mother in the last eleven days than in all the rest of my life with her combined. I feel a little badly about that.

I wish Candy could stay here to go through this with me, with Mom, with us. With the original tiny family that was put asunder when I was thirteen, and my sister was taken away from me. We have never lived in the same house or even city since then. But she would forfeit her job if she stayed any longer. Forty hours is all we have.

* * *

 

Candy texts me to say she’s at WalMart. She’s looking for something for Mom, she says, maybe flowers or something that smells nice. I feel so helpless, she says, and she is so negative I was trying something positive. I wrote her back:

Yes, she’s in the irritability phase. Also all this anger and grief that she’s dying is combined with her own personality to make for some complaint. For all we know, she may also be suffering from severe depression. A lot of the symptoms are certainly the same.

To this Candy sent a frown-face icon.

I talked to Mom about metaphysics, about what I’d read and what I’d experienced and heard others experience. Beings of pure love was one that stuck out in my mind. I said we would both go to be with them, to be in their embrace of pure love and acceptance, the thing we’ve always craved most. She seconded that, saying it was hard to find. I recorded it on my phone’s voice recorder.

* * *

1:54p.m. She’s very negative right now. Everything has a tinge of annoyance – of anger, perhaps. She worries about details like repairs around the house and complains of them not being done sooner, and is anxious for them to be done soon. She worries about money. “What will it cost?” she says, when she hears that my Land Rover’s back door doesn’t close properly.

* * *

 

“Last time you were here, you weren’t here,” Mom says to Candy, sadly.

Unfortunately, Candy disputes this, and now Mom is both sick and not feeling heard.

“We didn’t talk about essentials,” Mom murmurs. That’s true, but Candy again resists.

“You might want to give some on this, Candy,” I say. “Mom did ask you guys several times to look through photo albums with her and nobody did, and she said even at the time that everyone was always on their phone. So it’s valid, even if it’s not a serious crime.”

But her anger, the bitterness, the sadness is hard to hear. It’s hard for me to feel. Silke says, “I can totally understand her. She tried her best and did so many difficult things and she hoped it would be enough. But it wasn’t.”

Yes. I think Mom feels cheated, betrayed by hope. To stay alive for so long, she had to have outsized, even unrealistic expectations about living, and very little thought of dying. “I know this is a surprise,” I’d told her earlier. “It really surprised us. And I know that’s scary.”

* * *

The hospice nurse arrives. Suzanne. Candy is also sitting on the couch. Suzanne examines the pain medication pump that Mom drags with her everywhere.

“She’s used twice as much medication in the last twenty-four hours,” says Suzanne.

Not long afterward, Mom begins to cry. I go to her and hold her. I am crying too, for the first time in a day or two. She looks at me and looks into my eyes. I look at her and want her to see only love.

“Did you hear that?” she says. “It’s double.”

“Is that why you’re crying, Mom?”

“It means,” she says, “I’m going to die sooner.” She weeps.

* * *

 

Mom says she thinks her unsteadiness could be due to her medication. Suzanne disputes that, gently but firmly. “It’s not your medication, Inge.”

“Well we don’t know what the problem is,” she says.

“Mom,” I say, “we know that the cancer is spreading in your body. It’s getting into organs and pressing against nerves, and it’s causing such pain in you that you have to take pain medication constantly. It’s making you vomit when you eat most food.”

Suzanne says, “Inge, I know you’re angry, and I get why. I do.”

“No, I’m not angry,” Mom says, and in a fairly typical Momism, she adds, “Sometimes I’m just pissed off” – she takes a breath, and then tears fill her eyes – “because I did everything right.”

Ah, there it is. I fight back tears to see such vulnerability and pain, such crushing disappointment.

“You sure did,” we all say. “You worked and tried hard. You did everything right.”

“I just need to take some time with this,” Mom says, her voice small. “Everybody is telling me what’s going to happen but I need to feel inside myself and see for myself.”

She cries for some time, on the way to the bathroom, and on the way back, once she gets into bed.

“You leaving doesn’t sound good, either,” Mom says to Candy.

“I know, Mom,” Candy says. “It doesn’t sound good to me either.”

* * *

 

Suzanne tells Mom she’s leaving, Mom smiles warmly and thanks her. Suzanne kisses her on the head.  “I know you don’t want to hear it,” Suzanne says, “but you just need to relax. If you keep being angry and fighting it, it’s going to shorten your life.”

“I didn’t have a lot of time to adjust,” Mom says.

“No you didn’t, but, whatcha gonna do now? You just need to relax, sweetie. Find your way into this new place.”

* * *

 

“Our world doesn’t exist without our mom in it,” Suzanne is telling Candy. She’s on her way out the door. She had told me the same thing a few days ago. She encouraged me to seek out support or talk to their counselor.

Today was a day of reckoning.

I’ve pushed out of my head any notion of the grieving I will do afterward. To think of that, on top of everything else, would be too much. I know I can only imagine the pain I will feel from the loss of my mother, from the suffering she endured, from my remaining guilt.  But one day at a time.

Mom's young friend Gregory gave this to Mom a few years ago

Mom’s young friend Gregory gave this to Mom a few years ago

The End of Suffering vs. The Will to Live

November 4, 2014

Mom and Adam in the kitchen store

Mom and Adam in the kitchen store

Mom reached for her lamp in the night and fell out of bed. It was a little after 4am. Adam heard her calling and helped her back to bed. He recorded a half milligram of Ativan and an unusual three pumps from her pain meds.

When I go into her room at 8a.m., she says, “I’m feeling a lot of pain from my leg. And I’m dizzy.”

“I’m sorry, Mom.”

* * *

She is irritable this morning. I hear her tone of complaint. It’s always been hard on me.

* * *

 

“I should get outside today,” she says, “don’t you think?”

“Sure, if you want to, Mom.”

“I need to take better care of myself.”

“You’re doing the best you can.”

“I just don’t know what to do anymore.”

* * *

 

She wants to call her bank because she has been convinced that she paid a doctor’s bill that she keeps getting in the mail.

“They’re probably not open till 9,” I say.

She looks at me. “It’s not 9 yet? This has been a long day.”

* * *

 

“She shouldn’t leave today,” Mom said, breaking into tears. She’s talking about Muschi. “But I know she has to watch her grandkids.”

Muschi brings mom fried potatoes and eggs. Mom begins to eat, and then to cry. She pushes the food around on her plate. I reach out to clasp her shoulder.

“I can’t do this all day.”

“Do what, Mom?”

“Watch her leave.” She looks at Muschi. “We’ve both been through this many times. We know how this goes.”

“Every time I’ve said goodbye to you,” Muschi says, “I’ve seen you again, and this time is no different, honey.”

* * *

 

I suggest that Mom turn over on her side, so as not to put stress on her bedsore.

“Which way?” she says. She speaks slowly, and a bit thickly, like a child just awakened.

“It doesn’t matter,” I say. She begins to roll to her right side, groaning a bit as she does so.
“You can put a pillow behind her,” the hospice nurse says.

Mom turns her head toward me. “You stay here,” she says.

“I’ll just be your bolster,” I say. I climb onto the bed and support her back with my body. The hospice nurse is delighted. My right arm goes under the stack of pillows and my left rests on Mom’s arm. She dozes. I work on being present. Mostly asleep, she says something about a fairytale. “A fairytale, Mom?”

“He dies in the end,” she says.

We all die in the end, I think.

She is so fragile. So scared. I cannot but weep unobtrusively.

In the living room later, Adam surprises me by opening his arms. “Come here,” he says.
The instant we embrace my body begins to shake, and for the first time in my life I cry on a man’s shoulder, and his hug just goes on.  His eyes are wet.

I sometimes find myself wondering how I will manage during the period after her passing. Will I be able to work? I think I will just leave the house empty until spring, no renters, and then sell it. The work that needs to be done on it overwhelms me.

* * *

 

“I love you, son,” Mom says.

“I love you too, Mom.”

“More and more,” she says. “Not less and less.” She is silent for a moment. “Amazing how that happens.”

* * *

 

In the late morning, Adam and I look into flights, prices, and frequent flyer miles to get my sister, who lives in Alabama, back to Colorado.

Adam and Muschi hatch the idea of bringing in a proper hospital bed, one with air sacs that are supposed to alleviate her bedsore. It is delivered just before noon. Mom’s German friends Monika and Inge come as well, and talk to Mom. We have the bed installed in the living room – with a couch on either side for visitors, and the TV straight ahead so Mom can watch her German TV shows. The air pump that circulates air through the sacs is quite loud. I take it off the metal bedframe and sandwich it between two pillows, where it can barely be heard.

* * *

 

At around noon Muschi goes into Mom’s room to say goodbye. “I will see you soon,” she says. “I love you.”

“I love you,” Mom says, groggily.

“I love you so much,” Muschi says. She caresses Mom’s face and hair.

“Just go,” Mom says, not unkindly. She always preferred just to be dropped off at the airport curb, to avoid all the long goodbyes and drama that go with accompanying a traveler inside.

They say goodbye again, these two women who have been best friends since 1948, and who came to the United States at almost the same time, and Muschi departs.

* * *

My good friend Tedd writes me from D.C.:

i send you a big hug. cried again when i saw your mom’s pic with you. it’s so hard cam, i am really sorry you and your family are going through this. always your brother, tedd

So many people have written so many nice things, some by email, some on Facebook, and some in the comments on the blog.

* * *

Mom’s legs bear some weight today, but she still began crying as we came back from the bathroom. “I can’t even be dignified,” she said. She is now in her hospital bed, which we’ve put in the middle of the living room.

“You’re plenty dignified, Mom. Courage and grace personified.”

She gave me a skeptical look.

* * *

She is upset that Pumpkin doesn’t come to her as before. I know her well enough to suspect that she is wondering if Pumpkin senses something changed in her. What she says is, “It’s too much change.” She pets him and cries more than I have seen her cry.
“I’m just having a little falling apart,” she says.

“Don’t you worry about that, Mom. You have every right. I’m surprised you’ve not done it more.”

Somehow, my nephew Dylan materializes. He hasn’t contacted Mom since he moved out of her house about four months ago. She hears his voice as he comes in the back door. “I’m not ready for this,” she says. But he is here. She hears his tales of financial and legal woes and I catch what I think is impatience. He does kiss her on the head and tell her he loves her as he leaves to go to his second job.

But before he leaves, Mom says, “I don’t know how to do this. This has been such a horrible day. Muschi left. I can’t walk . . . I just want to go to sleep.”

Did she literally mean to sleep? Or something more final? “Whenever you want to do that,” I said, in either case, “you just go ahead.”

Not long after, she asks for another Ativan, sooner than usual, because she literally wants to sleep.

* * *

In the mid-afternoon, Mom has a hankering, she says, for steak and broccoli and zucchini. Adam goes out to buy these things and then prepares them. As a cook, Adam is very enthusiastic. The meat, though expensive, turns out not to be very good – not Adam’s fault – and I’m still hungry.

“I’ll fix you something,” Mom says.

“You’ll what?” Mom hasn’t been able to stand up to cook in the kitchen for over a week now. Cooking is one of the many basic pleasures she’s been denied.

“Help me up,” she says.

So we actually shuffle into the kitchen together, and Mom goes to the refrigerator, bends down to rummage around, finds chicory roots and yogurt, and somehow stands up long enough to slice up the chicory — and make a chicory salad with curry, olive oil, and garlic. I’ve had this before from her, with sour cream in place of yogurt, and it’s surprisingly good. The soundtrack to “Rocky” may as well have been playing in the background. To sit up, to get out of bed, to shuffle and stagger to the kitchen, to bend down and push and lift, to stand and wobble and cut and pound, to stretch toward a high shelf and carry, to stir, to shuffle and stagger back to bed, to get into the bed without much use of legs – she may as well have been competing in a decathlon. If her goal was to rage, rage against the dying of the light and do what she loved, she succeeded.

* * *

I know she has a lot of life left in her because she can still annoy me.

This reminds me of a Facebook comment by my sister-in-law Jannilynn’s mother, Linda. When Linda visited a week ago, she spent a good deal of time massaging my mother’s feet. In her comment, she said that she could tell from touching my mother that it wasn’t yet time.

November 5, 2014

I was wearing my ear buds last night, watching TV on my laptop, and didn’t hear Mom calling for me. Note to self. Adam eventually heard her, and helped her to the bathroom and back. We were both up again in the middle of the night with her, and as I was stirring in the morning I heard her hiccupping – three or four times, five or six hiccups each. And sure enough, she then started to vomit. Adam was holding the bag when I came out to help. She cried. When she was done she felt dirty, wanted all the sheets cleaned, wanted to brush her teeth and use mouthwash, wanted a bath.

“I feel like I’m walking into this strange place and I don’t know what’s going on or what to do. And I’m doing it all alone.” She wept.

* * *

Getting to the bath, and into the bath, and out of the bath, and dressed, and back into bed, was a trial.  She seemed in constant pain, and it took great effort to move in small ways.  “I just wish I could go to sleep.”

I wasn’t sure I heard her. “What, Mom?”

“I wish I could go to sleep. If it must happen, I wish it wouldn’t be prolonged. I just want to go to sleep.”

So maybe that’s what she had meant yesterday, when she said she just wanted to go to sleep.

“I know, Mom.”

As she was getting back in her hospital bed she said to me, crying again, “I don’t want to do this.”

“I know, Mom.”

She curled into a fetal position and wept quietly. Tears ran down her face. There is nothing harder to watch. I leaned over the bed railing and hugged her.

“When’s the last time we clicked my pump?” she asked.

“It doesn’t matter, you can do it whenever you want.”

“Click it again,” she said. “I don’t want to feel anything. I don’t want to feel mad, sad, glad, nothing. I just want to be nothing.” I pressed the delivery button on the pump’s bolus. She had already used her glass pipe after her vomiting. Now I offered her my vaporizer. The marijuana would reduce her anxiety, and help her to sleep, and even help to prevent further nausea.

She had just taken a few draws on the vaporizer when Rob came by. Rob is Mom’s neighbor, the one who rolls the joints, and takes out her trash, and drops by to check on her.

As he walked into the living room his eyes took in her hospital bed. “Wow,” he said. I sort of hoped he wouldn’t do that. “You’ve got your own hospital bed and everything. Not doing too well?”

“Not worth a crap,” she said. “You’ve sure been gone a long time,” she said.

“My back has just been killing me,” he said. Rob had recently had back surgery. “I thought I had problems walking,” he said. “I’m sorry.”

“Light one up,” she said. “Let’s share one.”

So they did. Adam, who had begun to nap in Mom’s room before coming out to meet Rob, went back to sleep.

“It may have been a dream,” Mom said, “but I dreamt I was in a tub of pot water.” In a sort of fog now, she asked if there were any good movies out on Netflix or RedBox or at Hastings Books and Video. “I want to see a good movie,” she said. “Not weird, not heads chopped off, not muscles growing out of weird places.”

After Rob said goodbye she lay back and closed her eyes.

To sleep, perchance to dream.

* * *

In an email a few days ago, Julio had said he hoped I would soon share good news. I told him I wasn’t able to do that. He wrote back this morning.

Amigo Cameron
My spanish , my pseudoenglish aren´t good enough to express feelings
Only one thing i can tell you, Courage !
The fact that things like that happens, makes my “ faith “ collapse…
I insist, Courage !
Perhaps…
Julio

Mom awoke from her nap and turned on the TV, she said, to get her mind off things. I was putting on my shoes to hang out the wash when she said, from her hospital bed, “I didn’t know I would be so incapacitated. I thought I could do stuff. Slowly, carefully, but I thought we would still be able to do stuff. Now I don’t even know where I am.”

* * *

7:52p.m. Mom is sleeping. She is losing the use of her legs, and feels pain in them. That may be due to the retroperitoneal tumor pressing against her spine and other nerves. I think a doctor told us this could happen. She is on constant pain drip, and must take Ativan around the clock to avoid vomiting. And today she vomited in spite of the Ativan. As it has been for over a week, the vomit was greenish bile.  The hospice nurse says that may just be her liver giving up, and she may be switching to liquids-only pretty soon.

Yesterday and today Mom said what was previously unthinkable: that she just wanted to go to sleep and not wake up.

Her desire to end her suffering is finally starting to outweigh her will to live. And that is becoming my feeling as well, but more slowly. Because I’m not the one suffering, I can’t know how to properly weigh the pros of the longer life with the cons of the terrible psychological and physical suffering that life requires.

But I do know that the more time I spend fearing the end, the less time I’ll be spending with my mother.

* * *

At 8p.m. I walked into her room. “Mom,” I said. “Mom. I need you to take your Ativan.” She did not open her eyes. She just opened her mouth. I put the pill in her mouth and still without opening her eyes she drank water from the bottle I held to her lips. A few moments later, she groaned. “What is it, Mom? What hurts?”

“My butt,” she mumbled, meaning the bedsore.

Nothing to be done about that. I had already applied a marijuana and coconut salve. She whimpered again. I stood there for a moment, watching her, and then walked around the bed. I got up on it and put my head against hers.

Look at her hands, crossed over her abdomen. Inscribe them on your memory. They are thin now, fingers slender, the left one looks older, in this light, than the right one, which looks smooth. My right hand lies atop hers. These are the hands that have lovingly made me many a meal. They’ve caressed me and patted me on the shoulder or the side of my head. I take in her clavicle and collarbone, more prominent now, but familiar, a part of her I must have seen thousands of times without registering what they looked like.

I start writing in my head, and then I think about the fact that I’m writing in my head rather than being present with my mother, and then I’m reminded of Natalie Goldberg, in Writing Down the Bones, relaying the story of how her Zen master had told her, “Zen or writing. You can pick only one.” Which affirmed for me that writing is a form of meditation.

Pay attention. Be here now. See and hear her breathing.

I then began thinking again, this time about the two little books hospice had evidently decided it was time to bring and casually leave lying around. The books listed the symptoms that tell you someone is likely to die in one to three months, and when they’re days to weeks away, and when they’re hours to days away. Specific changes in breathing that I didn’t commit to memory apparently happen near and at the end.

She’s still breathing.Mom and Leaves

Sticking It Out

November 1, 2014

Mom loves hands

Mom loves pictures of hands

Adam had been up with my mom since 4a.m. He’d made her coffee, grated her some apples – but she vomited up the apple.

“It’s just an apple,” she said, distressed. “An apple a day,” she added, her voice breaking. She began to cry. “I haven’t eaten in four days! Look at me,” she said, lifting her wrists. “I’m just skin and bones.”

* * *

“I love you,” she said.  This was later.

“We’ll always be connected, Mom.”

“Always have been. I don’t know how,” she said, “but I always felt that. You were such a gift. A gift. But I didn’t always treat it well.”

“Treat what well, Mom?”

“My gift,” she said. “You.”

* * *

A little while later, she called to me in the living room. “I’m getting dizzy. Can you come in here?”

I am lying on the bed next to her. Her eyes are closed but she is not sleeping. I am working on my laptop. With my left hand I caress the back of her head. I put my laptop down, sit up, and turn to her.

“Mom, I want you to know that whatever you think you did or didn’t do, you are forgiven. I just feel love for you. Just pure love.”

She nods serenely and pats my face.

* * *

The hospice nurse came and assured us that the Ativan could not be causing her nausea. Mom had probably misconstrued some cause and effect. “I think your nausea is caused by the progression of your disease,” she said.

These are chilling words.

But in fact, Mom has taken pain medication and Ativan all day, with no vomiting. A hospice nurse suggested that Mom may have felt ill a time or two, taken an Ativan – and vomited shortly afterward, before it had time to work. She could then have concluded the Ativan was at fault.

* * *

We were sitting in the living room when she said, “I wonder how much money is going to come out of this inheritance. We’ll find out next week.” The inheritance refers to her brother Horst’s estate. Horst died intestate, without a will, in June. Bonnie had told me, soon after I’d arrived in Montrose a few days earlier, that my mother was doing all she could to hang on for my sister and me. “She wants to make sure you guys get that money,” Bonnie had said.

“Did Christa tell you that?” I now said to Mom, referring to my mother’s only remaining sibling, who lives in Germany. “That we’d know next week?”

“Yes. I don’t know how long I can do this,” she said, referring, I think, to the act of staying alive.

She wonders if she can stick it out for another week?

* * *

Muschi arrived from Las Vegas and Mom cried. “Sixty-five years!” she said. They hugged a good long while, Mom’s face tear-streaked, and before long we had moved Mom into her bed, along with all her logistics. She was tired from the Ativan, barely able to stay awake. At a little after 9p.m. I took Muschi to the worst, saddest, seediest motel in all the world, and she insisted on staying because it was only three blocks away from Mom.

November 2, 2014

I awoke to the sound of my name. It was about 4:30a.m.  I bolted upright, debated pants, ran out in my boxers. Mom was at the kitchen’s backdoor. “Pumpkin!” she called. “Pumpkin.”

She was calling Pumpkin, the amateur therapy dog.

She turned and saw me. “I thought you were calling me,” I said.

“Just trying to get him inside,” she said.

She went back to her coffee, tottering on uncertain legs. Her movements were not precise; I helped her to keep her balance. She would drink about a quarter of her cup of coffee.

* * *

Adam and I offer her different choices of food.  She tells us: “If you guys keep talking about eating, I’m going to get really nauseous if you try so hard.”

She hasn’t eaten much today. She vomited once, losing what she had eaten. Sometime before noon, she interrupted a lengthy period of dozing with these words: “crunchy fish filet”. She didn’t even open her eyes. “I want a crunchy fish filet.” We baked two from the freezer, but one was perhaps freezer-burned – Mom spat it out — and the other was salmon, which Mom had never eaten and never would, Muschi relayed to us later.  Still no nutrition all day.

* * *

Between naps, Mom instructs Adam on how to make potato and leek soup her way. She has him bring a spoonful to her on the couch, where she tastes it and pronounces what it lacks. Sea salt. Dill. Heavy cream.

She mostly sleeps as we watch the British TV series, “Poirot”. Pumpkin, the old orange poodle, sleeps on her stomach or above her head.

I am standing near the couch when Mom reaches up for my hand. I kneel down on the floor and she holds my hand against her cheek. She begins to cry. “The pain,” she says, and I can’t make out the rest of it.

“What, Mom?”

She works to pull herself together. “The pain,” she repeats, “losing you – I don’t think I can handle it.”

* * *

I talk to my sister for a good while, but Mom is asleep or talking to the hospice nurse throughout. I hear Mom asking if someone can share their thoughts on food. What to eat. The nurse says it’s too individual, no advice to give. Mom is disappointed. When Candy calls back, Mom is again asleep. I make another blog post, “Missing Her Already”, and not long afterward my sister’s best friend, Tanya, who loves my mother as her own, calls to ask how I’m doing. She is amazingly loving and supportive and I thank her.

* * *

I come in and hear Mom and Nancy talking about my sister, I gather.

“. . . there’s bills, and work, and everything. I remember what it was like, being a single mother and not being able to go anywhere because of the kids.”

This makes me happy for my mother and sister, my mother’s understanding.

A few minutes later, she is complimenting Nancy on the life she has. “I see your grandkids and your kids and you’re making all those improvements. It’s really enviable,” she says. And then she turns her face away from Nancy, but I can see her features form into pain, and I see the tears in her eyes.

* * *

Candy calls again, but now Mom is asleep, again. I am determined to get them talking more. They have always had a challenged relationship, a good deal of miscommunication, and my sister is now commuting and working 14-hour days. They haven’t had much conversation since my mother and I flew my sister and niece to Colorado in June.

* * *

Silke comes and rubs Mom’s feet. Mom suddenly sees a vision of hazelnut cheese spread on crackers, along with green grapes (not the red we had on hand, those were too sweet for this kind of cheese). Adam and I head out to try both City Markets but we can’t find the Mirabo cheese she wants. I pick out a spreadable sundried tomato and basil cheese, and Adam gets another kind of cheese and hazelnuts he plans to crush and mix with the cheese. “That won’t work,” I say to him, “trust me.” Mom eats quite a bit of all this, especially Adam’s concoction. We cheer her eating.

We have her on the Ativan again.  I now keep a notebook of everything she takes and when — food, pain meds, Ativan, cannabis oil.  Now we can spot trends, and also know when to give her the next round of meds. She has stopped the frightening vomiting, which had seemed to portend a rapid, and therefore frightening, decline.

* * *

In the kitchen Muschi says to me, “Can’t we get your sister here? I would pay for her ticket.”

“It’s not so much the cost of the ticket,” I say – my sister couldn’t afford it but I’d put it on my credit card – “but the income she’d lose if she took off from work. She doesn’t have vacation time yet.”

That gives me an idea. I know the solution to this problem. I send a text to Candy, asking how much after-tax income she’d lose if she came for a week. Maybe we will get her here after all. I am thinking of Candy as much as Mom.

Carrie, who was 15 when she walked the Camino with us and just graduated in May, stops by to say hello.

* * *

At a little after 8p.m., I ask if Mom wants to call Candy. She says she’s too tired. Then she changes her mind. She fumbles with her new phone for a while and I take it from her and find Candy’s number. They talk for ten minutes or so. Mom cries a little when Candy repeats some of the memories she’d written in her letter. They must be talking about the possibility of Candy coming to Colorado. Candy says, “I’m workin on it, Mom” and Mom gives a timeframe of the next seven to ten days.

Candy told me that Mom’s oldest grandson, Dylan, who lives down the street but hasn’t been in touch with Mom since about July, is afraid to come here, to Mom’s house. “What bullshit,” Adam says.

* * *

Adam made a very good potato leek soup today from Mom’s recipe. Other than the Halloween candy, I’m eating pretty well. I’m not exercising – I don’t see anything in Montrose I want to do. I’m not a runner, I have no bike here, no mountains to hike, and no yoga class that interests me. Weightrooms bore me. I suppose I should look into Gold’s Gym and see what classes they have. Exercise is a great anti-depressant.

In the evening, Mom always goes to bed first – sometime between 7 and 9p.m. – and Adam falls asleep while we’re watching a movie. I finish the movie and go to my bedroom, where I am nightly faced with the Hobson’s choice of either closing the door and risking not being able to hear my mother, on the one hand, and subjecting myself to Adam’s locomotive snores on the other. Of course I leave the door open.

Improving, Worsening, or Leveling Out?

October 31, 2014  Journal

I am beginning to wonder if I gave too much weight to the fears of Mom’s friends on Monday.  Mom said this morning that she had wondered what was going on, on Monday. Her friends may have been greatly affected by the suddenness of her decline, but would it continue at the same rate?

* * *

12:15p.m. Mom vomits, a lot. My heart sinks. She must get sustenance. She has kept down none since yesterday.

* * *

12:45p.m. After a hot bath, before she can even get her shirt on, she begins to vomit again. She finds one of the blue vomit bags on the floor. “It’s like a heart-retching,” she would say later. “A stomach-heart-retching. Deep down.” I bring her a shirt and a glass pipe filled with marijuana. In between her vomiting I light the pipe for her and she breathes in the smoke.

“This could be cachexia,” she says, nodding. She positions her mouth back over the bag.

Cachexia. The wasting disease. We worried that she had the dreaded cachexia earlier in the year, when she dropped over fifty pounds in a few months. It’s cachexia that usually leads to cancer’s fatal malnutrition. But my co-founder in Physician Cognition, a doctor, told us that cachexia is not present with a certain albumen score. Mom’s score meant she probably didn’t have it. We were relieved at the time. But what about now?

Later, she says that she thinks the culprit is the Ativan. “Every time I take that lately,” she says, “I vomit.”

The hospice nurse thinks the vomiting could be due to her cancerous liver. She uses the phrase “your liver involvement”.

I ask the hospice nurse if the IV painkiller could be a cause of nausea too. “A few days ago,” I said, “she thought she was getting nauseated right after pressing the button.”

“I may be just sick,” Mom says firmly.

“Yes, but if you’re nauseated right after doing something, that something may be a partial cause.”

“It may be just coincidence,” she says.

What was this? We have switched roles. I seem to be the voice of hope, and she the voice of reason.

* * *

A movie that Mom isn’t paying attention to has about 20 minutes left. “Hey, Mom,” I say. “Do you want to go for a wheelchair ride?”

“Not right now,” she says. But ten minutes later, she says she’s ready. She sits up to put on her shoes. Her gorge rises and she grabs a blue bag, into which she vomits.

“Oh,” she says. “I hope this isn’t going on all day.” She begins to cry. I hand her a warm towel with which to wipe her face.

Adam and I load her into the wheelchair. She doesn’t like that it’s out front. She hadn’t remembered it was there. A minute later, she says, “I saw that we have some madelines to eat, I wish I’d known that.”

“Do you want one now?” I say. We are still near the house.

“No, I just want to know these things,” she says. She is trying to reassert a semblance of control over her life.

The neighbor’s dog, Cassie, runs up to the fence. Mom has fed her bologna nearly every day for years, and this has made the shy, small, fat Border Collie my mother’s best friend. Mom reaches down and through the fence and pets Cassie. “I know, it’s all so different now,” she coos.

Magic Wheelchair Ride

Magic Wheelchair Ride

I push her for a while, but it is hot and I ask Adam to take over so I can take off my sweater. Mom puts it on her legs, which are cold. She takes my hand and we walk like that, to Main Street. There we stop to take in a tiny Latina girl dressed up for Halloween as a bee. Mom is pleased and watches her for a while, offering compliments, and then we cross Main. No one is talking much. I am thinking cachexia. She probably is too.

She spies a new store that sells kitchen supplies and asks if we can go. “Good afternoon!” she says, as her wheelchair crosses the threshold. The clerk says hello. Adam pushes her through the aisles as she points at and sometimes fingers various kitchen implements. I pay attention to my state for a moment and confirm that I am feeling miserable.

I imagine that I am in one of the dreams I know I will have some day – the dreams in which my mother is there, simply existing, or doing something mundane, and I am filled with the greatest happiness. Why can’t I feel that now? Why can’t I look at her as if her presence is the rarest, most precious thing? I try this, and it works – I feel a smile taking over my face, and joy fills my heart – but then it becomes too much and I have to stop for fear of weeping. There is no nostalgia without pain. The meaning of nostalgia, in fact, is a return to pain.

* * *

Mom said she had wondered what was up on Monday, with everyone acting as they were. She was too groggy to express any surprise that people would visit from so far off, and at the same time, but now she says, “I just don’t want anyone to know something I don’t know.”

“No one knows anything more than you, Mom.”

* * *

Silke, Berle, Monika, Peggie. They began arriving at around 5pm. Peggie brought necklaces with flashing lights. She was ready to give out treats. “No one ever comes to my house,” she said. She lives on a ranch outside of town. Mom said the last trick-or-treater to come here was 8 years ago.

Silke told a story about how her husband Gordon once rode along in a Lear jet that flew to San Francisco, where the three passengers had lunch and then turned around and flew back to Colorado. The assembled women all made different sounds about this fact. Mom said, “Someone is out there living my life.” She paused. “And I’m living theirs.” She said she was tired of “this cancer crap”.

* * *

“Cameron, you’re so calm,” Peggie said. She thought it was the cannabis oil she had provided me with.

“I thought he’d changed,” Mom said. “He’s been really attentive – well, he’s always attentive. But – and he was patient. I thought I must be dying.”

The women laughed.