The Last Camino

December 18, 2014

On November 24, I stopped publishing my writings on my mom’s last camino. I have a number of theories about why that is, but one must surely be that I simply had nothing new to say, nor the same need or desire to say it. My mother’s decline simply went on and on, longer than any of us expected. It was inevitable that I’d adapt to the unfortunate situation just as we humans quickly adapt to (and take for granted) the good things in life. I could see that death was not as imminent as I had feared. That had made me feel a certain desperation in the first weeks, but I couldn’t sustain that intensity for so long. Maybe I had compassion fatigue.

Another theory is that my depression had lifted, and I began both to work more on my medical diagnostic startup and to have less desire, or need, to capture everything, to feel heard. I was not especially sad in the morning, nor did I walk through the outside world like a duckling who’d lost its mother. Why did my depression lift? I have read a lot of research on the power of cultivating positive emotion, how, in the words of Dr. Barbara Fredrickson, positivity broadens our cognition and creativity while building our resilience and immunity. For almost seven weeks now I have shown and felt more love and compassion and gratitude than for any similar period of time in my life. That may have lifted me in spite of myself.

Catching Up

Here is where we left off last month, ending with the latest as of Friday evening, December 19, 2014.

November 25, 2014

I don’t even know where I am.

You’re in your bed, Mom, in your living room, in your house.

You keep saying that.

* * *

Pain in my tummy, she says, crying.

I press the bolus button. I’m sorry, I say. It’s not your fault.

What if I partied too hard? she says. And got drunk all the time and –

You didn’t do any of that, Mom. You lived a good, honest life. You were a hard worker, you cared about people, you were always thoughtful and giving.

Then why doesn’t anybody visit me? she says.

I remind her that she’s constantly got visitors, and she can’t name anyone she wants to visit her who hasn’t.

* * *

She is tetchy. Tells me I speak to her very disrespectfully, then that I have an offensive tone. “I think you are mistaken,” I say. “That’s your opinion,” she says. She is peevish that I can’t hear her in the kitchen. She leans over with her big coffee mug full of coffee and I think she’s trying to set it on the floor. I reach out for it and she withdraws it quickly and gives me a stare I can’t figure out.

Later, she is frustrated with her nausea. “I wish I could just go away,” she says.

“Come here,” she says later, motioning me to come closer. I go to the bedside and she holds up her arms. I lean down to hug her and she says, with tears, “I’m sorry I’ve been so unbearable.” I tell her she’s not at all, and that no one thinks that. Regarding her inability to eat most food, she also apologized for being a “prima donna”. Again I told her that it wasn’t her fault and no one thought of her that way. We all loved her.

“I want to go home,” she says.

Hospice must not have seen their first How to Die book lying around, so they had brought another one. It says that with 1 to 2 weeks to live, a person uses “symbolic language” of “going home”.

“You want to go home?”


I consider this. “Where is home?”

“Someplace not here,” she said.

* * *

I’m still not depressed. I trust this is a temporary state of affairs, but I’m curious about why. A kind of fatigue or numbness? Shock? Not denial, certainly. Since Peggie called me weeks ago I have had no hope. But I don’t go about my day in quite the same hopelessness and sadness. I can become sad very quickly – if I think about Mom’s psychological suffering, or what my life will be like afterward, or even something I’ve written down. The tell-tale humidity enters my nose, the lump that Mom calls Timothy lodges in my throat, and if I want not to cry I have to stop thinking about whatever I was thinking about.

* * *

November 26, 2014

We were up at about 2:30a.m. Mom went to the bathroom and took a milligram of Ativan. She was up again at about 8a.m. and asked for her coffee. As she drank it I asked her to take some more Ativan.

“What’s it for?” she asked.

“It helps you not to be nauseated,” I said.

“I don’t like not knowing what I’m taking.”

“You’ve taken it every few hours for over four weeks.”

“I want to see a piece of paper,” she said, and mimed words going across a piece of paper, “that says what it’s for.”

We went around on this for quite a while. It would be almost an hour before she agreed to take the Ativan. We’re lucky she didn’t vomit after drinking her coffee.

* * *

She seems to have awakened with less short-term memory in place than ever before. “What are we going to do today?” “I’d like to go somewhere.” “I want to go outside and read.”

“It’s cold outside, Mom. The last two times we took you out in your wheelchair it was warmer than today and you got cold.”

“You can dress me and we’ll go outside.”

“You can’t walk, Mom.”

“I can’t?” She struggles to absorb this.

Each discovery like a new blow. I was reminded of Bill Murray’s character in “Groundhog Day”. Each day begins anew, exactly as the day before, except for the new choices he makes. But Murray’s character remembers the previous days, and so is able to learn. My mother awakens each day into a nightmare of unremembered incapacitation.

The hospice nurse Deb asked Mom what she thinks about “this process” – of dying – and Mom said, “I don’t even know what process is going on.”

* * *

She talks of travel with friends, and “an ocean of pumpernickel”.

* * *

After I have reminded her of the situation she is in, she says, “You’re so stoical and it’s my LIFE we’re talking about.”

* * *

She looks at her glass mosaic lamp. “I remember how EXCITED I was to get the lamp. Through the lamp came three colors: yellow, green, green, and emerald.”

“How did you show up in my life? I didn’t just show up and say hello are you my son? I would have never ever ever ever left you alone.”

* * *

“Do I have a clear thought?”

“Sometimes you do.”

She begins to cry.

* * *

Nurse Deb says, “Are you excited for what’s next?”


“No,” Mom says. “I don’t even know what’s next.”

“You don’t know where you’re going next?”

“My whole life was taken overnight, not to be replaced by anything I know,” Mom says.

“Do you know heaven?”

Mom shuts down. “I don’t want to have this discussion,” she says. “I’m not having this discussion. I’m sorry.”

* * *

“I just want to go home,” she says. “Just get it over with.”

* * *

For two and a half hours this morning, my mother was more morose and dejected than I have ever seen her. Not crying, but seemingly utterly defeated. Nurse Deb mentioned something about Mom’s condition and Mom simply stared at her for a long time. Deb would later say, “I can see you’re angry, Inge.” Mom didn’t answer. “And I can understand why,” Deb added.

Deb met Mom a number of years ago, when Mom taught a class on cooking and culinary arts at the Rocky Mountain Academy, a private school that’s now shuttered. “In a very short time,” she tells Mom, “you made a huge impact on my daughters’ lives.” Deb has tears in her eyes. “At the worst time of their lives, you were there for them. And my oldest daughter is who she is and is doing what she’s doing in large part because of you.” Her daughter, who had taken Mom’s cooking and manners classes, is a professional baker. “She especially loved the manners you taught around eating. I’m so grateful that I could come here and see you this morning, Inge. I admire you so much. You are such a strong, brave, creative woman. I wish I had an ounce of your creative juices.”

* * *

“Pumpkin?” she calls. Once again the dog has gone into her bedroom and jumped up on the bed, where he has always slept. I go and fetch the dog. Madeline had given him a bath for the occasion, so he’s pleasantly fluffy. I put him down on Mom’s lap and she smiles. She says to Pumpkin, “Tomorrow I’ll have to give you treats.”

“Do you want me to get some of his baloney from the fridge?”

“That would be nice,” she says. Her smile is like direct sunlight after darkness.

She’s getting to do at least this one thing that she used to do before. It’s a happy moment, if you can catch it, and I was lucky enough to be paying attention to what had just happened. I cultivated gratitude then and there. One day I will be happy I did – that I had a moment that felt happy at the time rather than just in retrospect. May there be more such moments for both of us before she goes.

* * *

So we just threw ourselves into the very expensive popcorn, she says.

* * *

Adam calls. Mom gives me a thumbs-up. Later she chuckles at something. Again I can’t believe I’m seeing my mother happy. I can barely hear her chuckle and it sounds very different, but she is clearly enjoying a moment in time.

She hasn’t fully surrendered yet. Maybe she just can’t remember to.

* * *

Shall I wake up my arm or wake up Big Ben?

* * *

9:42a.m. She’s asleep again. Though I will say that if one sound can bring her out of her sleep, it’s the awful-to-her sound of me cracking my knuckles.

In the early evenings, not long after sundown, she will fall asleep. I watch a movie or work on my laptop from the emerald couch to her left. Sometimes I go into the spare bedroom so as not to worry about waking her. At around 11 or midnight I throw Mom’s bedroom comforter onto the reddish couch to which I’ve added a foamy couch-width layer of some kind of substance brought by hospice. It fits the couch perfectly, and it’s a lot more comfortable. Some nights, like tonight, I hear her making sounds that might mean she’s distressed, but I’m not sure. I ask the question.

Are you having pain?

Tonight, just now, she says “yes” and nods her head. I find the bolus and press the button. She groans a few times over three or four minutes and then falls asleep. It occurs to me that I’m lying in one of three places where Mom spent a lot of her time, and certainly most of her time in the house: this end of this couch. Well, it’s no big deal. But that is the sort of story that might bring me to nostalgia after she’s gone.

I read things on the web for a while. I hear Mom whimper. I press the button.

I stay up too late to reliably get seven and a half hours of sleep. This morning, for example, during what I hoped was a brief interlude of wakefulness before we went back to sleep, she said she wanted coffee. It was 7:30a.m., and I’d gone to bed at a little before 2a.m. I’m doing the same thing tonight. I suppose, for the same reason Americans refuse to carpool: it’s just the only really private, and unworried, time I have.

* * *

Thanksgiving November 27, 2014

Another night of pain the base level of hydromorphone drip can’t handle. Several times I awoke to hear her and to press the button. She whimpered. “Just make it go away.”

We woke up at a magisterial 10:20a.m.

“Happy Thanksgiving, Mom.”

She brightens. “Happy Thanksgiving.” A pause. “I didn’t intend to forget about it.”

“I know you didn’t, Mom. It’s okay to forget.”

* * *

“Would you like some tea?” I ask.

Her smile was beatific.

* * *

“Can you tell me, in complete sentences, what is going to happen?”

“What is going to happen when, Mom?”

“Today. What are we going to do? Are we going to get dressed, go outside, see a movie, or the dolphins, or – I just want to know something.”

* * *

Are you a doctor? she asks, for the second time.

No, but I’m a lawyer.

You can’t help me.

No, but the doctors couldn’t either.

She chuckles.

* * *

It feels like you’re holding me here.

No, Mom.

I don’t know what to think. I’m trying to be kind. But I don’t know for what purpose.

* * *

She has mentioned two things that don’t seem to relate to one another. I ask her what one has to do with the other. I am calm.

“I thought I might find a friend in you,” she says, “but I guess not.”

She has been like this today. She’s a little paranoid, hears disrespect and offense in neutral or even loving statements.

Picking at her primal wound.

* * *

The TV reminds her of someone’s sister being buried above Meeker. It becomes exhausting to ask her to repeat herself, see her annoyance or discouragement, hear what she’s saying, realize it makes no sense, and try to think of what to say that will not upset her. Sometimes, whether I have heard or understood her, I say, “I think that’s exactly right.”

* * *

Madeline’s daughter Kelly has offered to stay overnight with Mom to give me a break. She dropped by this evening to pick up Pumpkin and bring some Thanksgiving food. Mom wasn’t interested in eating. Kelly, who had also taken cooking and manners classes from my mother, kneeled next to the bed and took Mom’s hand and told her, “I think about you every day. I love you so much.” Mom’s eyes welled up.

Later, Mom said, “I know everything is difficult for me.” I didn’t hear what she said. Kelly repeated it.

“I know, Mom. A lot of things are difficult. But you don’t have to do anything now. Just give yourself a break. Forgive yourself.”

She turned her head away from me.

* * *

She goes to sleep at around six. I hear her whimper and pause the movie I’m watching to listen. No more sound. I press the button just to be sure. Moments later, she reaches for it herself and I tell her I already got it.

In my Facebook feed, our friend Michele had brought back a photo from late September by liking it. I liked it too. As I did so, it hit me that I will be most sad when I revisit old memories – in videos, pictures, prose, her Facebook page, my own mind. I’m not doing it now. At least partly because it’s premature, but also for lack of time.

* * *

November 28, 2014

She needed six straight pumps of her medication last night. We eventually slept in till around 10a.m. She vomited up green bile, more than I thought she could have in her. When she vomits it comes out through her nose, too. She was nauseated several times lately, but without having eaten anything.

She has been sleeping for at least half an hour. I hear her stir slightly and she says, “I don’t want to die anymore.” She’s silent for a moment and then she says something else. I don’t recall it, but it doesn’t seem to be related.

I am less tearful now, in less pain, and even, one could say, less compassionate. Or maybe it’s just excessive pity I’m no longer feeling? I certainly couldn’t have kept up with the pace I set in the first two weeks.

* * *

“I just shot two lynxes,” Mom says. She’s been dreaming.

I’m tired of blogging, or just have no interest right now. When events and emotions were changing quickly, I wanted to write. Now that Mom’s changes are subtler and smaller, now that my emotions are higher and more stable, there’s not much that interests me. It’s just going to be a waiting thing.

* * *

“Do you want to sleep now?”

She nods. “There’s nothing else to do anyway.”

“Except talk or watch TV. Or we could look at the Camino pictures now if you want to.”

She shakes her head. “That part of my life is over,” she says.

I feel chilled. Is this just self-pity or is she really not able to appreciate it anymore?

* * *

Lilyhammer. Does it have to be pressed?


Does it have to be pressed? she says. She pushes an imaginary button in front of her.  She doesn’t know what has to be pressed to get the show started, but she knows there’s pressing that needs to go on.

* * *

November 29, 2014

2a.m. I’ve been pressing her pain pump. She asks to go to the bathroom – and then she wants to read, bless her heart. Is she able to understand? Will her eyes work? She’s said she can’t read text on the TV any longer.

“I’m a very avid reader,” she says, as if she were explaining her hobbies and interests on a game show. “And an even greater writer.” She’d never said anything like this. “Some people may think it’s not that great but I like it.”

I go through a number of books to find one she agrees on. I guess correctly that she has not read Doris Kearns Goodwin’s No Ordinary Time. She was never a reader of history or biography. She says she started it once, and it was an excellent book, and she’d like to start it again. I pull it out and hand it to her. I turn on the light behind her. For a few minutes she flips through some pages, stopping occasionally because her eyes are closed.

* * *

The nurse who came late, at my request, to increase Mom’s demand dosage from .2ml to .3 ml, mentioned a drug that will help with Mom’s agitation. I don’t know where she heard that Mom was agitated, but I was happy to know we might be able to reduce her irritability and paranoia.

* * *

November 30, 2014

It was a nice visit with Damon and Jannilyn. I left at a little before noon because Bonnie was ending her shift with Mom at 1p.m. When Silke arrived at a little after 3p.m., Mom woke up.

And then she, and we, went through her prognosis all over again. And she cried, and she cried.

* * *

6:40p.m. Mom woke up and began crying again. She looked at my face and started crying. I hugged her head close to me and placed my cheek against her head. It’s so hard to watch her keening. Not as hard as it would have been a few weeks ago. I have detachment now. Chemical, maybe. I’m more like Adam, the least sentimental person I know: This is part of the process. It’s sad but not tragic. It’ll hit me later.

* * *

I ask her, “What’re you thinking?”

“Oh, son.” She lifts her hand to the level of her forehead and waves it in circles for several seconds. “I don’t have a coherent thought,” she says.

This happens again at about 1:30a.m. The lights are out and I’m on the couch, unable to fall asleep, needing to wait to press Mom’s pain pump in any event. Mom begins crying vigorously. “Mom,” I say. “Are you having a dream?” She nods. “Do you want to talk about it?”

“Oh, son,” she says, and turns away.

I feel shut out. She has refused to talk about anything of depth because, I suppose, depth is now equivalent to death.

* * *

“Do you want some water?” I say.

She looks at me. “What does it matter, really?”

I don’t have an answer. I have thought the same thing: why would we force food or water on her? It’s not like it’s going to heal her, or extend her life by weeks or months. If she drank more she might live a day or two longer.

“It’s up to you, Mom,” I say.

* * *

She would later explain that she had died and people were late to her funeral. This was what she’d been dreaming, apparently. But at first she didn’t understand it as a dream. She said it wasn’t, but I repeated that she had been dreaming and she didn’t resist it further.

When Silke was here earlier I told Mom the Teal Warrior sisters had asked me to let her know that she shouldn’t stay on their account, for fear of disappointing them. Mom also cried about Candy and me. Silke told her we were mature and could handle it.

* * *

“Bin ich krank?” Mom asks.  Am I sick?

Silke and I say yes.

“Mit was?”  With what?

“Krebs,” I say.  Cancer.

“How much quality time do I have?” she asks, in German.

“We don’t know for sure,” I say. “We know that people can survive for two weeks without food, on just water, but you’re not drinking much water either.”

Unless I see evidence of some greater acceptance that may have come from repeating this for the third or fourth time, I may not tell her about her situation again without a strong reason.

* * *

She puts her hand on my face. “From your first breath,” she says. She’s gazing at me with so much love.

* * *

“I wanted more time,” she says to Silke and me. “More time to accept.”

* * *

“What is the etiquette for this?” she says.

“There is none,” Silke says.

“I feel I’m making a mess of it.”

“Not at all, Mom.”

“I just want to pack my things and go home.”

* * *

“What do they say is wrong with me?”

* * *

“Where is Brianna?” She’s crying.

“She’s in Alabama.”

“Does she have a job?”

“She just got one, I think.”

“Who hasn’t visited at all?”

Of course the answer is, Most of the people on the planet have not visited. What does she want to know? “All of your friends have visited,” I say. “Some of them come almost every day.”

* * *

“Why don’t you go in the spare room and go to bed,” she says. “I don’t want to feel guilty because I can’t go to sleep.”

“Well, I’m concerned about you having pain and not remembering to press the button.”

“I’ll find it right here,” she says, pointing correctly. “I’m just going to read.”

“Okay. I need to pick out a book for you then.”

“I can just browse on my own,” she says.

“No, Mom, you can’t.”

“Why not?” she says, astounded by my answer.

“You can’t walk.”

“I can’t?” she says. She’s genuinely amazed. “Have we had this conversation before?”

* * *

December 1, 2014

Since about yesterday, she has become very weepy, she sometimes speaks to me in German, and her body and especially her hands shake with a kind of palsy. She drank only a small portion of her 6-ounce water bottle yesterday.

“Who is paying my finances?” she asked this morning. “The utilities, electric –“

“I am, Mom. There’s nothing to worry about.”

“I still need to know how much it is so I can pay you back.”

* * *

“I don’t even know where I’ve been the last few months.”

* * *

December 2, 2014

And today I wrote nothing.

I worry about getting used to this routine. I suppose over five weeks of this may have worn me out, caused me to begin to conserve energy, or sanity. Either way, it weighs on my mind.

* * *

Mom ate two small bowls of chicken noodle soup. I thought of one of the nurses yesterday, telling Mom, “You’re a tough woman, Inge.” I gathered the nurse thought she was hanging on longer than expected.

* * *

December 3, 2014

Every time I open my mouth I wonder if I can trust you.

Well, I’m the same trustworthy son you’ve always known.

That’s what you say, but there are trust issues.

* * *

“If you didn’t think I was your mother, I wouldn’t be worth anything.” Something like that. The syntax was a bit different, but I think this is what she meant.

* * *

I’d been helping her out. “Thank you,” she whispered.

“Thank you,” I said, “for being my mom.”

Such a grand smile crept across her face, and she opened her arms for a hug.

* * *

December 4, 2014 6:18a.m.

I’ve been up for an hour with Mom. She has such pain in her abdomen that she was crying, again. I hit her pain pump, gave her some morphine (a mistake?), and renewed her Ativan and the other thing, Halo-something.

“I been thinking,” she says, “about comparing the good colors with the evil colors.”

“What are the evil colors?”

“There are also safe colors,” she says.

“What are the safe colors?”

“Yellow,” she says.

“Yellow is a safe color?”

“Well,” she says, “I wouldn’t say safe, but you can rest a while.”

“What are some good colors?”

“Temerald green,” she says.

“Emerald green?”

“No, not emerald, temerald.” She thinks for a moment. “Did I dream that?”

* * *

December 6, 2014

“Who says that is good for me?” she says, referring to the Ativan I’m offering her.

“Well, the nurses do and I do.”

“Who are you?”

“I’m your son.”

“You’re not my son. My son would be frantic with worry. My son would be kind and compassionate. My son would offer me food.”

This followed her crying “Rudeness!” when I took a cup out of her hand so she didn’t have to risk falling out of bed to set it on the floor.

* * *

In the middle of last night, Adam and I are both up. Adam was up with Mom first, and I took over to sit her on the toilet. Adam retreats to the kitchen and I follow. We talk for a while, and then I hear Mom sobbing. I walk into the living room. “Are you okay, Mom? Are you in pain?”

She shakes her head. “It’s just fear,” she says. She’s been prickly so I don’t ask her fear of what. Besides, most human beings would say she had plenty to be afraid of.

* * *

With Adam here to watch Mom, Alex and I drove to Telluride in his rental car. Alex, one of

Alejandro and Cameron in Telluride

Alejandro and Cameron in Telluride

my best friends from law school, had arrived on Thursday night from the Dominican Republic, and would go back early Monday morning.  We had a few hours of really nice skiing under lifts 4, 5, and 6. I’m so out of shape. Six weeks of sedentariness. My thighs gave out early. We went to the Brown Dog for pizza. Then we drove home, tired as could be. Probably some altitude effects there. Alex and I began to watch a movie at about 7p.m. but at about 8p.m. he begged off, saying he was going back to his hotel to sleep. He leaves already tomorrow to spend his last night in Grand Junction.

But how to capture the gesture he made, a guy without a lot of time to spend away from work and family, traveling for longer than it would have taken for him to get to Eastern Europe? I’m grateful, and I’m also happy that he (surely) feels better for having come. He said he’s seen how his mother never really recovered from the deaths of her parents, so he felt he had some insight into what I must be going through.

That’s empathy.

* * *

I remain almost disturbingly sanguine. I seem to have accepted reality far more quickly than I’d have imagined.

* * *

December 7, 2014

Alejandro has gone. He came to the house this morning at around ten, we hung out together with Adam for a while, and then he drove Adam to the urgent care to check on a staph infection. Not long afterward Bonnie came to watch Mom and we three boys went to Starbucks, where I showed Adam and Alex the rough video of my company’s differential diagnosis

Adam, Alex, and Cameron at the Black Canyon

Adam, Alex, and Cameron at the Black Canyon

product, and then, because we still had time but nothing to do with our hands, we went to Horsefly, a bar across from Coffee Trader. And then to the Black Canyon, whose steep walls in the coming dusk they both enjoyed. “Thank you, Cameron,” Alex said.

* * *

Back at home I was happy to have Alex join me in a movie, though we said almost nothing during it. I’d never heard of “Detachment,” with Adrien Brody, but it was very good. It was late, and Alex said he’d be leaving for Grand Junction soon. As Alex was in the kitchen giving Adam his new contact information, I was standing by the front door, ready to give him a hug and escort him out. But they were taking longer than I thought they would, and I decided I wanted to watch my mother sleep. I stood there watching her, and after a while I began to cry.

She opened her eyes and I leaned down to hug her and kiss her head, and also to hide my eyes from her. She made some cooing sounds and stroked my arm. “What’s the matter, son?” she said, tenderly.  How did she know?

“I’m okay,” I said, because it seemed better than saying, “Nothing.”

I hugged her some more and kissed her. By now Alex was watching us. I stood up and he saw my face. He reached for her hand in both of his and said goodbye, and said something like, “Bless you.”

I walked ahead of him out the door.

“It’s tough,” he said.

“I think that movie softened me up,” I said, laughing.

“Me too,” he said. I heard him sniff. He took his glasses off and began to clean them.

I wondered why I was still standing there. I moved to hug Alex. “I’m so grateful you came,” I said. We both shook as we cried. I could feel his belly contracting with the same kind of silent tears I shed. “You’re a real friend,” I said.

“You are too.”

We hugged for a good long while. “Keep us posted,” he said.

“Yeah,” I said, and, remembering that some of the Teal Warriors had said my last post was on November 21 and they feared the worst, I added, “I know I’ve left people hanging with the blog.”

He told me not to worry about that, but to keep him updated. “Even if it’s something short,” he said.

And then he was off to the Caribbean.

* * *

December 9 (really 10, at 1:24a.m.), 2014

This morning I showed her pictures from her Facebook feed. A warm orange-yellow sunset over the ocean. A picture of Carrie, now living in Nebraska. “Gorgeous,” Mom murmured. She gazed at these with such wonder and gratitude. I started showing her videos. A dog that walked (or appeared to) on its front legs, its body in the air, while pissing on the sidewalk. A baby chimp clutching a stuffed-animal baby chimp. I was sitting on the emerald couch and holding the phone’s screen toward her, so that she watched the video with the open curiosity of a child and I watched her beautiful face and shining eyes. I read people’s comments on her Facebook page. I spoke in different voices and made everything sound better, or explained or summarized things to sound wonderful. I noticed she didn’t respond as much as she did a few weeks ago.

* * *

December 11, 2014   From Telluride, brief overnight visit

Slept in a bit, dehydrated from karaoke the night before, and got up at around 10:20a.m. I then spent a few hours cleaning up the condo for holiday guests before driving back to Montrose. Adam said Inge Bell had decided to stay the night, and that Mom had awakened in the middle of the night and was obstreperous and paranoid. Very difficult. Suzanne said this sounds like “terminal restlessness.”

Mom said, when she saw Suzanne, “I’m glad it’s you.”

Mom said she hurts all over. “Why does it have to be this way?” she asked Suzanne, who told her that she appreciated Mom’s example and her grace.

“She doesn’t want to go,” Suzanne, said, “she’s just really bummed. She got some peace during that conversation.”

“The folks who usually go down kicking and screaming are strong-willed and they’re women,” Suzanne told me. “Maybe because of all the obstacles they have to overcome. Your mom definitely falls into that category.”

But she refused to take the liquid bowel care medicine or a suppository. Suzanne gave her a choice among those two and hurting and Mom chose not to take the medication.

* * *

11:25p.m. Nurse Suzanne, I have learned from Adam, more than doubled Mom’s base dose. Suzanne thought Mom had crossed a line between consciousness and comfort, and she needed to be less conscious. Indeed, Mom hasn’t been able to sit up, wake up, or say much of anything since I arrived 10 hours ago. “Why are you so loving to me?” was her sole sentence of the day.

“Because you’re lovable,” I said, bearing in mind her primal wound, hoping I could somehow reach her more effectively now than at any other time in her life. “Because I love you. You’re worth loving.”

It is . . . something (sad? Buddhists say no) that I have been feeling my mother’s face and hair and holding her hand more in the last few weeks than in the rest of my life together. Kissing her, calling her sweetheart. I think her insecurities caused her to push people away at times.

* * *

I was concerned that so much mouth breathing during sleep would really dehydrate her.

“Are you thirsty, Mom?” I asked this several times. She shook her head at the first. At the second she simply stared ahead, vacantly.

* * *

I have had a few moments of sadness. In the car on the way from Telluride. In the house as I watched her and reflected on “terminal restlessness” or how she doesn’t want to die, even now.

* * *

She reached an arm up. The gesture wasn’t clear but I had the feeling she was seeking a hug. I leaned down and hugged her, and she reached up, this woman who was unable to wake up or respond to questions, and wrapped both arms around my torso, holding them there herself. After a long hug I stood up and caressed her face and her head. It’s now something you’d think of, I suppose, as a skull. The bones that give a skull its shape are to her face as a mountain range is to the plains on either side.

* * *

My having nothing to say in my blog after late November coincided with a surprising lift in my mood. How could I be less depressed, less sad, less anxious as my mother’s condition worsened? But there I was, trying out a number of theories to explain why. Acceptance? Had I, as humans do, adapted to a new normal? I had found a routine in the midst of things. Or maybe I just recognized her less and less? Or medication that included thyroid pills was working.

* * *

The routine left the stage of her bedroom and stuck to the stage that was the hospital bed in the living room. We stopped walking her to the bathroom and instead helped her to step out of bed, turn around about 120 degrees, and sit on the portable commode. (How many people who have used that commode have died within weeks or days?) She was able to eat fewer and fewer things, even as she complained of hunger and blamed others for not bringing her something she could eat, whatever that was. For about the last week, she has probably not consumed and kept down more than a spoonful of anything. She’s not even drinking much water. How can a person survive for weeks on less than six ounces a day? In a dry climate? And now she sleeps without cease and breathes out over and over through her mouth.

* * *

Sometimes there is a long pause between her breaths. Some are only five seconds, but some are seven, even ten. Ten seconds between her out-breath and her in-breath.
Our friend Michele texted from the Middle East to tell me that she wanted to visit Mom again. She didn’t care that Mom might not be able to talk, and didn’t seem dissuaded by the prospect of arriving (next weekend) after Mom had already passed away. “For support,” she said. And, she added, because the love between my mother and me had inspired her to go to her own mother, herself with Stage 4 breast cancer. Her mother had abused her, physically and emotionally. When Michele was 14 her mother threatened to kill her over a dish of food. “My world changed completely,” she said. I told her that Mom had suffered a similarly arbitrary act from her father that propelled her out of the house.  Imagine how bad home must have been when she all but ran from it at the age of 15.

How on earth did Mom manage to live with Opa, in Germany, when I was an infant? She was only 23, 24 years old, just a stone’s throw from the terrified 15-year-old who had spirited herself to safety.

* * *

December 12, 2014

My master Samuel Beckett once wrote a good friend, a producer of BBC Radio, after her estranged husband died.

All I could say, and much more, and much better, you will have said to yourself long ago. And I have so little light and wisdom in me, when it comes to such disaster, that I can see nothing for us but the old earth turning onward and time feasting on our suffering along with the rest. Somewhere at the heart of the gales of grief (and of love too, I’ve been told) already they have blown themselves out.

* * *

“Would you just . . . stop talking? Leave me alone?” She was nearly as obstreperous tonight, but not as bad as Wednesday night, when she pinched and bit Adam and Inge Bell and threatened to call the police on these people who were holding her in this house against her will. Today she was sedated with both painkillers (the dosage had gone from .45ml an hour to 1.0ml an hour) and the two relaxant medications. Perhaps selfishly, I asked Nurse Suzanne to dial the painkiller down to .9. Several hours later, Mom and I had some tender moments.

* * *

The next time she woke up, she was sitting on the edge of the bed. I ran out to help her use the commode. She sat there for quite a while, that vacant look on her face, queerly expressionless, along with her disinclination or inability to speak much. Separated by several minutes each, she peed four or five streams. At last I sat her on the bed and there she would sit, stubbornly, falling asleep while sitting, falling backwards, but refusing to lie back in the bed. “I want to go to sleep,” she’d say, and no sooner had I stood up and repeated, “You want to go to sleep?” than she would shake her head or say “no”. When Adam or I offered her water or help getting in bed, she was prickly. And she refused to take her relaxant medication. We went ‘round like this.

* * *

December 13, 2014

Mom was up and restless from about 5:30, when Adam called me out because Mom was trying to get out on the wrong side of the bed, to a little after 7. She spent most of that time sitting, as before, on the edge of the bed. “This will be another indecision marathon,” I said to Adam. He nodded. Once again she would not either go to the bathroom or lie back down in bed, and once again she kept saying she wanted to go to sleep, or wanted to go to the bathroom, and I’d stand up and repeat what she’d said and she would shake her head or say “no”. And she was still refusing to take her sublingual drops. Adam and I have been dropping them in while she sleeps, and trying not to get caught.

* * *

“Who are you?” she asked, after she’d awakened in the early afternoon.

“I’m your son.”

“Aww,” Berle said, and to Mom, “That’s Prince Cameron, Inge.”

* * *

I still have more tics when I’m out of the house.

* * *

At a little after five I got into bed next to Mom, squeezing myself between her shoulder and the railing. With my left hand I held her left, while I reached my right arm across her chest and my right hand cupping the side of her face. I listened to her breathing, once even a light snore like old times, and I tried to imagine not hearing any such thing, being alone in my Telluride condo, or here, or a hotel room, and knowing I would never see or hear my mother again. It’s just such scenarios that get the waterworks going. But I also feel the gratitude: it hasn’t happened yet, she’s still here. I imagined a dream in which I touched my mother in the same way, and then woke up. I felt the difference between the slicing pain of waking up and realizing it was all a dream and waking up and thinking she’s right here with me now, just as in the dream, hallelujah.

* * *

Berle told me her father died five years ago and it still just kills her. She said it took two years before she stopped crying regularly.

* * *

I walked into the living room a little after midnight. Mom was on the floor between the bed and the reddish couch. “What are you doing, Mom?” Adam was coming out of the other bedroom. We got her back on the bed. She talked about birds. Yesterday, she’d said she had a cat. Still, she’d recently come out of sleep and asked me not to crack my knuckles, something she’s been complaining about for about 40 years.

* * *

Tonight she was speaking in German, and I spoke German back.

She said something about getting spanked when you get home.

“Did this happen in Germany?” I said. I think she said yes.

“I’ve really got to get home,” she said. It was the second time in half an hour that she’d talked about going home. I told her she could go whenever she wanted. I’d be okay.

* * *

It is well-documented that observing others in a particular emotional state automatically triggers the representation of that state in the observer (Dimberg & Thunberg, 1998).

* * *

December 14, 2014

I began last night in my bed (Adam was snoring in the living room), switched to the couch after we got up with Mom and Adam went into Mom’s bedroom, and was awakened from the couch by Mom moving toward the edge of the bed. Bonnie came over. Mom asked who I was. But she also smiled when I kissed her head over and over. “She’s smiling,” Bonnie said, with joy.

8:58p.m. I sit sometimes and look at her. Sometimes I do Tonglen. If I start thinking at all, especially of my future, without her, wishing she could see and experience what I am, my eyes fill up.

Wishing she could be here to experience more joy, that she could have experienced more joy, will, I think, be the hardest on me.

* * *

I thought I read somewhere that when someone is close to death, their eyes become “glassy”. Mom’s eyes are definitely different in their sheen, and they often focus at random places before her – even when I am trying to direct her attention to a particular thing, like the marijuana pipe or water bottle.

* * *

December 15, 2014

Mom has been all but unable to speak all day, and as of 9:30p.m., it has gotten worse. Her stays on the commode get longer and longer. For some reason she keeps getting out on the wrong side of the bed, and then it’s nearly impossible to persuade her to go back across the bed to the commode. She either freezes and continually says, “In a minute”, or she tries to get out on the wrong side of the bed, as if she thinks she’s going all the way around – or is just suffering too much short-term memory loss coupled with disorientation.

* * *

She calls Adam “son”.

* * *

I say, Are you in physical pain?


Psychological pain?


You’re not feeling a little angry or anxious or sad?

No response.

* * *

Nurse Suzanne nods toward my restless mother and says, “Is the new medication amount working for you?”

“She has hardly had any pain that required us to hit the pain pump and she’s still alert at times.”

“I mean are you okay with the behavior?” I look at her dumbly. “Some people aren’t,” she says.

“So they medicate their parents?” I said, bewildered. “Because they can’t just slow down, or manage their emotions?”

* * *

Sometimes I just park across from her and watch her. I look at the physical, pharmaceutical, and cognitive ravages to her face and neck and the erector set of her bones everywhere.Her right eye and the right half of her mouth droop open more than her left.

It’s as if she wants to jump in the air and hike across someone’s country and cook a meal for twenty, but all she can do, instead, is to sit on the edge of the bed. It’s a compromise between body and spirit.

For the first time ever, she’s now refusing her medical marijuana against nausea.  Adam and I talk about how much certain things make sense or are good for her, in hopes she’ll overhear and understand and be persuaded.

“You used to love your medical marijuana. You were always posting on Facebook and evangelizing about it.” I take a puff from her glass pipe. “Oh, man, I feel less sick already.”

Adam says, “And all the cool kids are doing it. Look, Inge, I’ll do it if you’ll do it.”

We have no evidence this has ever worked.

* * *

She lifts up a red box of tissues and drinks from it.

“Are you thirsty, Mom?”

“Very,” she says, in that slight wheeze.

“I’ve got water right here.”

“It better be water,” she says.

* * *

December 16, 2014

Adam left just after noon.  Lately he had taken to calling her “sweetheart” and “my beautiful Inge”.

* * *

I return from an errand and see a lot of people sitting in the living room with Mom. Bonnie, of course, but now also Peggie, another Bonnie, and a young guy named Trevor. Turns out I’d met Trevor at Peggie’s ranch a few months ago. He was kneeling on the floor next to Mom’s bed, on the emerald couch side, and eventually I noticed that he was crying.

Peggie said to me, “He learned German with your mom, took her cooking classes – they go back.”

Trevor got up to leave soon afterward. He went around to the other side of the bed, which Mom was closer to. He leaned down and hugged her and touched her and my eyes teared up because he was an age I used to be, and he was crying.

Bonnie cried today too. She said she usually holds it together until she’s at home – “I’m a shower crier” – but today had been different. She was also crying when she left this evening. She said she wanted a hug and said something to the effect that I had given her or made her feel something very special in the last few weeks, but I can’t recall what it was. Aunt Christa said, by phone from Germany, that I was “grossartig,” which means, according to Google, magnificent, fabulous, gorgeous, sublime, and whatnot. Fiona had made the call, listened to my update in English, and then given the phone to Christa, who, Fiona said, was having a hard time. She’s watching her family disappear, really. Renate and Mom and Horst all in less than a year. So am I.

* * *

She always wanted to be loved, and she was. I’d like to think she knew it, in the end.

* * *

With about four weeks to go, cancer took her curiosity, and the questions largely ceased.

* * *

I would do this again. For my mother, for others. If there is anything that is God’s work, it’s showering love upon the dying. Love is healing, and the more love, the more healing. Hospice workers are lucky: they get to express love and compassion five days a week. Mother Theresa may have said that if you wanted to stop being depressed or improve your life, you had only to be of service to others. She also said something I think my mother and I both intuitively understood: “Loneliness and the feeling of being unwanted is the most terrible poverty.” And: “The hunger for love is much more difficult to remove than the hunger for bread.”

And this gem: “Let us not be satisfied with just giving money. Money is not enough, money can be got, but they need your hearts to love them. So, spread your love everywhere you go.”

* * *

December 17, 2014

Recently, some of Mom’s friends have taken to telling me they love me. Now that I can actually work, they’re even relieving me at home so I can go to Starbucks for a few hours of work. Bonnie in particular. “Get out of here!” she’ll say. “Go do something.” Yesterday after Trevor left Peggie broke down crying. She said she’d been having a really tough time lately with Mom’s imminent death. (Things have changed so much in the last two months that I can write that matter-of-factly. Before, I’d have been freaked out to contemplate it.) I sat on the couch with her and hugged her close as she let herself cry.

Mom is refusing her medicine again. That’s hard on me, as Adam pointed out to me. I feel like it would be abuse to force it on her, but then she will suffer more without it. Bonnie was more forceful, and got in a milliliter of Ativan.

Mom had apparently nodded yes to whether the chaplain might come, so he came today – really nice guy – and as I showered I realized he was singing “Silent Night”. I had just been thinking of finding the German lyrics of “Stille Nacht” to sing to her. Even before my mother’s health became an issue, I could cry while singing that song by myself. And now it may well be that she will choose Christmas, or Christmas Eve, for her time to leave. I suppose the association makes sense. Candy and I already associate Mom with a special kind of German Christmas.

Ten or so days ago, Mom stopped really getting any sustenance. She would still say she was hungry, but most of the time she’d veto whatever we mentioned or brought out to her. When she did try to eat something, I’d find the forkful or spoonful of food still orbiting her mouth, unswallowed, for quite a while afterward. For the last few days, she has expressed no hunger, and has eaten nothing. When she drank water, she almost always choked a little. For several weeks now she has taken in so little water that I marvel a person can survive. A few ounces a day? Two days ago that changed: she drank more water than in the prior three weeks combined.

She is more likely to become obstreperous, or the new consciousness that used to be Mom’s is, the one demanded of Adam and Inge that she be allowed to leave, threatened to call the police, and even tried to pinch and bite them. On Wednesday night she did the same with me for not hearing what she was saying. “I’m gonna call the police.” And after I couldn’t understand something she’d said: “God, I’m going to a hotel.” I had to laugh.

* * *

She would awaken and mumble something.

“Do you need water?” I’d ask. “To pee?”


She’d sit up. Adam or I would prepare to help her off the bed.

Then she’d wave us off. “Not now!” or “In a minute.”

She might sit there for half an hour, forty-five minutes, and while she did we couldn’t go anywhere. Questions about whether she was ready, or whether she wanted to go back to bed, were ill-received. I understand that this negativity and restlessness or agitation hits many of the dying across the board, but I have wondered if hers has not followed some of its old courses. The exasperation, the defensiveness and prickliness, the victimhood, the annoyance and even anger when asked a question or given a suggestion.  The little girl who had been told (she once told me) that she was stupid and ugly and no man would ever love her — she was still inside.

“Don’t you touch me!” she said to me, one could call it a snarl, four nights ago, as Adam and I tried to help her out of the bed. I hadn’t heard that particular voice, I think, since I was a kid. It’s not the fullness of her speaking, so I don’t take it personally.

* * *

About two weeks ago, Bonnie said my mother wanted to talk to me. I went to the bedside and she said, “I’ve done a lot of wrong by you.” I said not at all, and that she should forgive herself. “I want you to forgive me,” she said.

“Mom, I have already forgiven you. A long time ago. I just love you, unconditionally.”

Bonnie said her face relaxed then.

* * *

Today, hospice nurse Suzanne told Bonnie, Lynne, and me that she thought Mom had another 48 hours or so. For the last two weeks I’d thought we were 1-2 weeks away, but this news, and the concreteness of an actual date (Saturday morning!), caught me by surprise.

“I thought you said she had three to nine days after her urine output stopped,” I said.

“I know,” she said, “but I’m seeing other things, like all the pain medication she’s needing, and her terminal restlessness and agitation.”

* * *

Bonnie and Lynne and I talked afterward.

“Whenever I imagined how this would go,” I said, “I saw her talking more about death and what would come after, for her and for us. She got that do-not-resuscitate living will a long time ago. She prepared all these other documents and put them in binders. She told us the combination to the safe and the PIN to her bank account.  She told us she wanted to be cremated and have the ashes spread over the Black Canyon. Even a few weeks ago she was concerned about the right people getting her things. But she hasn’t said anything about it lately, nothing about where she’s going or her feelings about it or what I or anyone will do afterward.”

Bonnie agreed. “She just doesn’t want to talk about it at all. It surprises me, too. But she just doesn’t want to go.”

“I don’t know if there’s some conversation I’ll regret not having. But I don’t think so.”

“Cameron,” Bonnie said, “I think everything your mother wanted to say to you she said.”

* * *

I learned that Mom often told her visiting friends, perhaps more than once each, about my having given her a flatscreen TV and a computer and a tablet and an iPhone and, recently, a Samsung phone. “She was so grateful for all that,” Bonnie said.

* * *

“You have taught me a great deal,” Bonnie said.

I looked up at her. “Really?”

“Absolutely. I’ve seen your calm, and your compassion. You showed me that it was okay to laugh and it was okay to cry. And,” she added, referring to a conversation I’d had with my mom about three months ago, “that I could gracefully leave a conversation without having to prove I was right or make someone see sense. I was so impressed when you calmly left the hospital room when you were trying to talk to your mom about things and she was resisting so much.”

“I don’t always do that,” I said. Which was probably an understatement.

“I got in a lot of trouble after you left,” she said. “Your mom looked at me and said, ‘And you! I’m mad at you. You didn’t even stand up for me.’ And I said, ‘Well, I can see where he’s coming from.’”

Bonnie stayed till mid-afternoon. I went to Starbucks for a few hours. Peggie relieved Bonnie. Lynne came over during Bonnie’s stay. Another Bonnie whom I’ve never met has been very helpful and caring since she got here.  She offered to come anytime, day or night. Madeline told me I was always welcome in her home. Bonnie had told me the same.

Peggie read a children’s book that involves heaven (can’t recall title) to Mom. “Are you ready to go, Inge? Do you want to go home?”

Peggie said that Mom nodded. New Bonnie affirmed it.

* * *

When I got back from Starbucks, and saw that Peggie was here and looked so serious and Mom’s gaunt bony face was pointed at the sky and her eyelids haven’t been closing all the way lately, before I knew it I started to cry. Peggie said to sit next to her and gave me a hug.

Still, it’s the aftermath that I’m worried about. I’ve been lonely enough for the past five years of separations and uncertainties and several different places to call home. How will I be afterward, without the original center of the solar system around?

What the master does better than we do is to proceed through uncertainty.

* * *

December 19, 2014 The Last Camino

Mom was mostly unconscious and unresponsive last night, and I could have slept in the bedroom without worry, but with the clock ticking I didn’t want to spend so many hours apart from her. I slept on the couch within arm’s reach of her bed again, getting to sleep sometime after 1a.m.

At about 6:30, when it was still dark, I woke up. I must have heard her in my sleep. The slight gargling in her breathing that we’d heard last night was now loud, ragged. It sounded terrible, the glottal, mucousy gurgling. I could have heard it anywhere in the house.

I raised the head of her bed. I got a sponge on a stick, and three or four times dipped it in water and squeezed it into her mouth. She moved her head slightly when I cleaned her parched lips. Her breaths were shallow and quick. Her hands were hot. Her forehead too. I texted this information to Bonnie, Berle, Peggie, Lynne, and Adam.

Mom was not at all responsive.  I brought out the big guns:  as I watched her face, I cracked all of my knuckles.


It was about ten minutes before it hit me: This sound is what they call the death rattle.

I looked it up to be sure.

A death rattle, known clinically as terminal respiratory secretions . . . is a sound often produced by someone who is near death when fluids such as saliva and bronchial secretions accumulate in the throat and upper chest.

Each description I found added that the sound was often very disturbing to family members, but it was not uncomfortable for the dying.  That all seemed to fit.

Oh, boy, here we go.

* * *

I climbed into the bed next to her, held her hand, kissed her head. Her hand was limp now. Her body like a furnace against my leg. I wept, quietly, unobtrusively, as usual, in case she could still hear and understand anything and worry about me.

For almost forty-eight years she’d been as constant as the sun and moon.

* * *

A text from Peggie. I’ll get dressed and be right over.

Peggie arrived at a quarter after seven. She talked to Mom about her strength, how she’d fought bravely and hard, and now she could go, she could just let go. She read from Psalms. There were a lot of praise the Lords. I wondered if that was too many praise the Lords for Mom. I found the “Do Not Weep at My Grave” poem and read it to Mom. Peggie said she saw tears leave Mom’s eyes.

Bonnie, who goes to work in Grand Junction on Fridays, had texted me, Cameron. I can’t come. I love you both. Please remind her that heart friends go on forever. And that I love her most. But she was here for ten minutes before I saw the text. “I was just called to come here, I had to pay attention.”

By now, Mom’s breathing was barely audible. She seemed much more peaceful now.

We found a German Christmas song on YouTube and played it for her. I played some of the videos I’d taken during the Camino – her singing a German folk song while walking, poles clacking along (here, again, she sings the same song almost exactly 3 years later); the Mourning Tenor of Los Arcos who had so touched her with his three different versions of Ave Maria, sung in a nearly empty church, in honor of his son; the Spanish woman playing the flying-saucer-like hang instrument; and the glorious scene of her spinning round and round in the great plaza of Santiago de Compostela:

Bonnie left and Peggie stayed on, encouraging me to go back to sleep. I wanted to write, but as I lay down on the reddish couch I found I couldn’t keep my eyes open.

* * *

Bonnie from the Plains, as she calls herself, arrived while I was sleeping and, according to Peggie, while Mom and I were both snoring, side by side.

When I awoke, Peggie was gone. Bonnie from the Plains sat on the opposite couch. She had just come back to Montrose from helping her husband, a dentist, do pro bono work for the Sioux tribe on the Standing Rock reservation in South Dakota. She said she had met Mom years ago through Peggie.

Peggie had said a few months ago, “Your mom is like a mother to me. Even though she’s not old enough to be.” Bonnie from the Plains said, “You know, your mom wasn’t that much older than Peggie, but Peggie had lost her mother a long time before and your mother just took her under her wing. That’s just how she was. A beautiful, classy lady.”

* * *

Nurse Suzanne arrived. After her divorce she had given herself the surname of Onelove.

“You know,” she said, “as a traveling nurse, I come into a lot of different families and get dropped into this great intimacy. This has been one of those that reminds me why I do this.”

“What’s different about them?” I asked.

“Some sort of heart connection,” she said. “With Inge, there’s a spiritual connection, and the way she’s like Lady Godiva, always out front, leading, saying to hell with rules that don’t make sense. She’s special. So thank you for sharing her.”

She continued. “One of the biggest gifts I got from Inge is that it’s okay to be normal, and you can still be special. She reminded me of that life lesson.”

Suzanne now checked Mom’s vitals.

“She’s tachy,” said Suzanne, referring to an abnormally fast heartbeat. It was about 110.  “She has a slight fever, which is normal. She’s breathing 28 times a minute. Twelve to twenty is normal breathing.”

Twenty-eight, I thought, was probably closer to her respiration on that first day of climbing over the Pyrenees a little over three years ago.  Almost 20 miles, up and down only, with a pack.

Suzanne took her blood pressure. “It’s 80 over something I can’t hear,” she said.

In the midst of the hubbub, I worked to finish writing this update for the many readers I left hanging in late November. Some have even written me privately or posted in the Teal Warriors Facebook group to ask me what was happening.

I hold her hand or kiss her head and eyelids every so often.

About half an hour ago, she was as responsive as I’ve seen her in a while.  She was conscious of my hug, squeezed my hand.

“I love you so much, Mom.  And I’m so glad I’ll be able to feel your presence every day.  I’ll be okay.  You go home whenever you need to.”  Now I was crying.

It was like one of those dreams you have after someone has died, when they’re alive again, for just a few, bittersweet moments.

Mom Rides Into the Sunset in her Wheelchair

Updated as of 5:15p.m., December 19, 2014

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.”


“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?”


* * *

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?”


“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.


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.


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.”


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

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?”


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?”


“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.


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.


“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?”


“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

Messages to My Mother

Listening to all the letters and Facebook posts we’ve been reading to her, my mother has had a

Mom, early September 2014

Mom, left, and sister Christa, early September 2014

hard time believing how people really see her.  She seems truly bewildered that she inspires people so much with her signature combination of passion and gratitude. With her passion for cooking and teaching kids to cook, she’s inspired an extraordinary proportion of her pupils to go into the culinary business.  She inspired many people with her walk on the Camino de Santiago, and with the blog she wrote of her journey with cancer before, during, and after the Camino.  On Facebook, and especially in the Teal Warriors group of women with ovarian cancer and their caregivers, she is known as an eternally positive, encouraging presence, and readers are clearly inspired by her perspective, like her gratitude for nature’s beauty even in the midst of life’s great challenges.

Here’s what I’m talking about.  Herewith, a letter from Grace, whom I met in Washington, D.C. several years ago, and, below that, a number of Facebook posts from my mother’s Teal Warriors, a wonderful Facebook group consisting of women with ovarian cancer and their caregivers:

Dear Inge,

We have never met, and yet, you have influenced my life immensely. I write these words to you today with so much love and gratitude.

Many years ago, I decided that someday I would walk the Camino de Santiago.

Last year, when the funds were (finally) there for me and the trip became a real possibility, I began my research and planning.

Your blog, Camino not Chemo, appeared on my Google search.

I read the entire story in one evening. I remember so clearly curling up on the couch, laptop there with me, ignoring my phone as it rang, literally blocking out the world… reading long into the night. “Just one more entry…and then I’ll go to sleep…”

But I couldn’t stop reading. Hours went by. Quickly!

Reading all about your journey, the physical one and the spiritual one, was a godsend to me. I know the words were sometimes yours, sometimes Cameron’s, but what shined through always was your strength. Your infallible spirit. Your determination. Your bravery. You are, quite frankly, one of the strongest women I “know”.

I was truly overcome with emotion when I saw the pictures of you there, outside the Cathedral in Santiago. A beautiful, joyful face. Healthy in body and soul.

And then, upon your return to America, I continued to follow your journey…

This battle that you have faced with such dignity and courage.

Many months later, when I began my own pilgrimage across Spain, you were with me. I thought of you as I followed your footsteps across the Pyrenees, when I knelt at the base of the Cruz de Ferro, when I swam in the lake at Molinaseca, and when I embraced my friends when we arrived in Santiago. I thought of you as I continued on to Fisterra, when I jumped in the ocean there at the “end of the world”; for me a pagan baptism, of sorts.

And I think of you now. Everyday! With so much love and gratitude.

Thank you Inge. Thank you for sharing your journey. Thank you for sharing your life. Thank you for educating so many of us, your faithful readers, on healthy living.

Your story has inspired me. In many ways, you have changed my life. My journey would not have been the same without your words. And I will think of you as I continue to walk my life’s journey.

I am eternally grateful.

Your friend,

Grace Santarelli

The notes below are a sampling from the comments from members of Mom’s Facebook group, Teal Warriors:

‪Denise:  Please tell Inge I’m thinking of her from the UK. Her posts, her pictures helped me through my toughest times with my late ‘Little Mum’.

‪Pam: There are no words to describe my feelings and I am sure those of many others. ‪Inge Cheatham‬ – you are an amazing warrior. As Kerie said, you have set a very high bar. I too was drawn in by the beautiful pictures and inspiring comments you posted each day. I miss them but mainly because they reflect you. Even through all of what I just read about, you were posting encouraging positive comments when you could. I am pleased that you are receiving such wonderful support. We will have tea together in a beautiful flower garden someday… Praying for a miracle. Also comfort, peace, and some joy in each day. I love you my friend!

‪Susan:  Please Let dear ‪Inge Cheatham‬ how very much she is loved by us all. We are keeping you all in our thoughts and prayers. She has warmed all of our hearts at one time or another.. God Bless

‪Linda: ‬ This flower is for you Inge… Protea – the flower of strength. Love and Prayers to you sweet Inge. Thinking of you now and always.

‪Andrea:  All the beautiful words and photos you have given us Inge here is one for you [with a photo]

Colleen:  Thank-you for letting us know ,your Mom has helped so many of us please let her know we are sending her positive healing thoughts.

‪Betty: ‬ Inge, my dear teal warrior sister, never have I known a more compassionate and loving lady that understands the sad part of our illnesses yet always finds joy in everyday. I love you, Inge. Please find peace and comfort in your coming days. God bless you, my special friend.‪

Valerie:  Inge….you are an inspiration to a lot of us,,,you are very courageous and beautiful. Prayers to you my dear.

Victoria: Cameron! Thank you very much for updating us. I am thinking about your Mom every day, and she is in my prayers. Even when i am not feeling good and can not write my post, i am looking if there an update from Inge. She is Amasing. Sending my prayers, energy and healing hugs to her. God bless your family!

Karen:  When I check Facebook, I usually start by looking for Inge’s post. The beautiful pictures and encouraging words are a great start to my day. Even when she is going through a rough time, she remains optimistic and informing. I have been going through a rough patch and had not checked for Inge so this news is hitting hard. Please let her know what an inspiration she is to us and what pleasure she gives us. You, Cameron, are such a loving and caring son. I’m sorry for all you’ve gone through but you have given so much to your mom and her pride in you comes through in all her posts. My heart is breaking but thank you for keeping us informed.

‪Ruth:  Please tell Inge all the messages she is getting, she has helped so many of us. She inspired me to get on with life. Cancer does not define us, it’s a part of us. She has helped so many of us to stop and see the beauty in nature around us. She is the rock on our teal warriors. (((((((((((((((Biggest hug ever))))))))))))

Susanna:  Thank you for letting us know Cameron , I think about you Inge every day , you are my backbone , you giving all of us hope and strength , and a lot of useful advice, a kick in the butt sometimes, you made us cry, and you made us laugh, you are an absolute angel. Lots of hugs prayers for you and your loved ones.

Sharon:  Prayers for you ‪Inge Cheatham‬, you have given so many of your teal sisters inspiration to keep going. Love and hugs to you.

Beth:‬ ‪Inge Cheatham‬ has been a beacon to me. She is the light of love and caring. Always striving for just a bit more of life’s beauty.

Want to see what they all mean?  Then enjoy this!

True History of the Camino de Santiago

Mom’s new favorite book, featuring Mom and Julio

Das war die Grenze

I am on the phone, trying to listen to a coaching client. This is harder than you might think, because I can also hear, through the spare bedroom door, the sounds of my mother retching.  My Mom’s journey through 2014 has not been what we expected.  

This is how many of her days begin, but to truly understand the beginning of her days, we need to start the night before. She goes to bed at nine o’clock. Just before she retires, she or a friend pulls a spoon out of the freezer and, from the refrigerator, both an orange wedge and a container of applesauce. The spoon is glazed with flour, so that the cannabis oil placed there comes off easily once frozen. She dips the spoon in the applesauce and collects some on the tip. She bites into her orange wedge with one hand, lifts the spoon to her mouth with the other, closes her eyes, grimaces, and swallows the little lump of cannabis oil and the applesauce. She washes away the bitter taste with the rest of the orange wedge. She may take an Ibuprofen — “half an ibuprofen,” she tells people — but for months she took no medication other than cannabis and half an ibuprofen.

Mom, early 2014

Mom, early 2014

More recently, she takes with her to bed the small pump that, with the press of a button, delivers painkillers to the chest port that was installed for last year’s failed chemotherapies. The button works only every eight minutes, though my mother tries to push it only a handful of times a day. I remember when, soon after she got it, she unplugged it for just a little while, and the pain returned. “I guess I’m tied to this thing now,” she said, somewhat mournfully. She is very aware of all the things that she can no longer do, or do alone.

At times that list has included eating, one of her greatest pleasures, or cooking, which for her may rate even higher for the joy it gives to other people. She had to stop visiting me in Telluride many months ago; the altitude was too much, and she could no longer enjoy the spectacle of me singing karaoke. Walking became difficult next, and when it became too much so we got her a wheelchair. Her young friends Annika and Gregory, to whom my mother is practically a grandmother, burst into tears when they saw it.

Annika, right, at a party for Mom

Annika, right, at a party for Mom

On her bedside table you would find a glass pipe into which she will stuff marijuana from a local medical marijuana store, some shatter hash made by some friends, which she will smoke with the marijuana to help her sleep, a bottle of smartwater, her cannabis oil vaporizer pen, and a long bean bag made for her by her friend Madeline. It requires 3 minutes in the microwave and is a balm to the pain in her midsection.

Until recently, at about midnight, perhaps one o’clock, she would wake up in crippling pain. “It feels like there is an animal inside me that’s trying to chew its way out,” she has said.  She would take some more of her cannabis oil (which, as she will tell you, is really more of a paste), and perhaps, though she usually tried not to, some morphine. (Painkillers constipate, which can lead to pain worse than they solve). Some nights the pain was so bad she’d take three hot baths. Somehow the hot water helped where even drugs did not. On a few occasions she called out to me, or even came to my door to wake me up. But there are a few times I will never forget: waking up in the middle of the night to the sound of my mother sobbing, vomiting, as she collapses, exhausted, with her arms over the commode.

Two weeks ago, I was in Telluride when our friend Bonnie texted me to say that she was taking Mom to the ER in Montrose. I jumped in my car and met them at the hospital about eighty minutes later. They put her on pain and nausea medication, but a few hours later she was discharged. At around eight o’clock that night, the pain in her abdomen and kidneys was too much. She was moaning, gasping, with pain. The pain, she had once told me, was worse than childbirth, not quite as bad as kidney stones, but longer-lasting. I would watch her as she sat on the couch, hugging herself, rocking to and fro, tears in her eyes, and I would try to imagine that.  We had to go back to the ER.

We walked out through the back door of her house. I steadied her with one arm and carried her bags and medicine pump in the other hand. Every step or two, she would stop, bent over, sobbing from the pain. Soon I was crying too, quietly, as always, and we stood there together like that, on the flagstone path in the moonlight, and then we trudged on, one step at a time.

There is nothing in life that quite prepares one for this.

From the ER she was admitted to the hospital, where she stayed for three nights. Friends visited. She told one friend, Silke, “Das war die Grenze. Das war die absolut Grenze.” Which means, That was the border, the absolute boundary.  “I couldn’t ever go through that again,” she said to several people afterward. “I’d shoot a dog in that kind of pain.”  She longed for home. But home, when we returned, was a very different place: friendly and helpful hospice nurses were in it now, and Mom was connected to her pain medication pump at all times.

Lately, due to the intravenous medications from hospice, she gets up in the morning less with pain and nausea, and she may sleep without interruption until a luxurious four o’clock. But on one recent morning I was up at nine and found her still in bed, looking drawn and spent. “Are you okay?” I asked. She shook her head, looking forlorn. “Nauseous,” she said. “I’m just trying to get on top of it.” She says this a lot, about pain and nausea: “If I can just get on top of it.” I ask if she wants a joint, she says no, so I draw her a hot bath with Epsom salts. As I retreat to the spare bedroom where I sleep, I can hear her moaning in the tub.

This is how the new day begins. Yesterday she posted on Facebook that she wanted to go for a drive today, to see the colors before they depart. But she doesn’t think she can leave the house. I bring her hot tea and a baguette with butter, and then I get on my coaching call.

After my call we watch her German TV for a while, soaking in the images of the Bavarian Alps on some travel show, oohing and aahing with our desire to be among them. Like in happier times, when we spent many a magical time at her brother Horst’s hotel in the Swiss Alps. Horst, who died unexpectedly only four months ago, from cancer. When the program is over we watch one of the movies I got from a RedBox at City Market the day before, “The Bone Collector,” with Denzel Washington and Angelina Jolie. For lunch we eat a thick soup made by Karla, a darling 83-year-old German friend of my mother’s. Then I go to Starbucks to get in three hours of work.

Her friends visit. Berle, who once texted me, “I love your mother!”, and who for many months brought the fresh goat’s milk that was the only thing my mother could eat. Peggy, who says my mother is like a mother to her (and she like a big sister to me), and whose house I sometimes stay in when Mom’s spare bedroom is full, or I have a friend in town. Karla makes soup and conversation. Silke brings apples and footrubs and a

Silke, center, with my Aunt Christa, left, and cousin Fiona

Silke, center, with my Aunt Christa, left, and cousin Fiona

never-ending smile. Bonnie was with Mom during her first chemotherapy, in 2001.  She comes every Tuesday night. They used to go out to dinner, now they eat in.

Rob comes from across the alley to check on Mom, and to roll the joints that no one else knows how to roll. The neighbors next door mow the lawn. Monika brings kaffee sahne, Epsom salts, and flowers, and fixes Mom’s German TV. Lynn, mother of Annika and Gregory, brings groceries.

Gregory, Mom's little buddy from birth

Gregory, Mom’s little buddy

Lynn also bought my mother a new washing machine, and insisted on giving Mom money for the new Samsung Galaxy phone I recently bought her. Another German named Inge brings books about historical Germany and fresh blueberry scones. Sometimes my sister-in-law, Jannilynn, visits from Grand Junction, bringing her young son, Braxton. Jannilynn has no relation to my mother, but she has really taken Mom to her heart.

Mom hides behind Jannilynn's tresses

Mom hides behind Jannilynn’s tresses

On a weekday afternoon, I will take several more coaching calls in the spare room, pacing the cramped space as I talk. And then from about seven to nine we will watch another movie. Tonight, we watch two-thirds of “Gandhi,” which I last saw in the early 1980s, when it came out.

Some nights I draw her bath, or fetch her oil, or lie next to her on her bed and rub her back or hold her as she tries not to vomit, but holds the blue vomit bag in front of her mouth, just in case.

My mother still expresses gratitude. For a call, a visit, a meal, a strawberry, a tree turning yellow and orange.

The writer and doctor Atul Gawande, in his thoughtful new book, Being Mortal: Medicine and What Matters in the End, writes, “The brain gives us two ways to evaluate experiences like suffering—how we apprehend such experiences in the moment and how we look at them afterward. People seem to have two different selves—an experiencing self who endures every moment equally and a remembering self who, as the Nobel Prize–winning researcher Daniel Kahneman has shown, gives almost all the weight of judgment afterward to just two points in time: the worst moment of an ordeal and the last moment of it. The remembering self and the experiencing self can come to radically different opinions about the same experience—so which one should we listen to?”

Those who love my mother believe their job is to make her most recent memories as full of love and warmth as possible. I am eternally grateful for all of them.


My niece, Brianna, visited for two weeks in June, along with her mother, Candace

My niece, Brianna, visited for two weeks in June, along with her mother, Candace

2014-07-10 09.58.06

Mom and I accompany my nephew Dylan to court for a traffic violation



Constantly Questioning What We Think We Know

Over the last week, Mom and I convinced ourselves of certain things about our interaction

Mom Checks Email and Facebook in Bilbao

with Dr. Chutzpah, and I summarized that thinking in the post Paging Dr. Chutzpah.  However, the doctor, who I’ll now call Dr. Denver, phoned us back today and answered several of my questions.  In the process, I realized that some of her earlier explanations had been merely unclear or confusing, and some of the conclusions Mom and I had drawn needed to be revised.

I toyed with the idea of leaving the original up to dramatize how information gets distorted by our thinking, and our thinking by our emotions, but I felt the disadvantages of being incorrect and unfair to an unnamed person trumped the advantages (the interest of generations of historians).  So the post as written yesterday has been amended, and I’ll add the new information below.

First, we had not been made adequately aware that Dr. Denver’s decisions had come on the heels of consultations with a team of about a dozen experts in different fields in what I gather is a routine multi-disciplinary meeting to discuss difficult patient cases.  I view the results of that kind of discussion more favorably.  While the groupthink phenomenon is always a danger, and I have no way of knowing if other doctors at the meeting stood to profit from any decision for chemotherapy, the presence of numerous people from different fields does present less opportunity for a decision motivated even unconsciously by profit.

Second, while Mom and I both understood the doctor’s comments of last week as meaning that Mom’s mucinous tumor was as unlikely to respond to chemotherapy as most mucinous cancer cells, Dr. Denver appeared (now I must qualify everything, even though I took contemporaneous notes) to say that, because the tumor is a recurrence of her original ovarian cancer, it would likely respond as well to chemotherapy as that first cancer did.

Below are my notes from the recent conversation, expanded from memory and edited for clarity.

What is the primary cancer? 

I noted that a pathologist said a few months ago that the spot on her lung – removed last summer before the Camino — was lung cancer.  And that another doctor had deemed that nonsense, saying it had to be ovarian cancer.  Dr. Denver said the pathologist had noted in his report that the spot “looked different from her original cancer,” and added, “if they say it’s lung cancer, they’re definitive.”  The pathologists at her own hospital, in any event, had concurred that the lung spot was a separate cancer, lung cancer.

So what kind of cancer is in this largest tumor?  Ovarian?

“I have no doubt,” Dr. Denver said, emphatically.  The lung lesion had been quite small, while the cancerous lymph node in question is not in a place where lung cancer spreads to, but it is where ovarian spreads to.

Pelvic Spots

Proton therapy is based on high-tech particle acceleration, which, like pelvic spots, reminds me of the Sun

I said that we had contacted a proton therapy center in New Jersey last week and were told today that their radiation oncologist saw other areas of concern in the pelvis and sigmoid colon.  He said this meant the cancer was metastatic, or had spread, proton therapy would not be appropriate.  (However, I could not get, or did not understand, an explanation for why removal would not be better than nothing).

There is something in the pelvis, Dr. Denver said, but that’s “relatively easy to resect,” which is Medical Latin for to remove.

Are these stable unchanged nodules something of concern?

Dr. Denver said something about Mom’s “trend over the years” that I did not capture, and went on to say that Mom’s cancer was behaving more in “a low-grade, indolent fashion.  If this was a high-grade cancer, she likely would have died of it by now.  In that sense she’s fortunate.  But where it’s decided to cause trouble is in a spot that’s impossible to get out without significant risk of just bleeding to death.”

Those other two sites, the doctor said, are another reason Mom “should get systemic therapy” to see if it “shrinks down.”  (I now see ambiguity in that “it”  — to see if what shrinks down?  The cancer generally, or the difficult lymph node?  Once again, I see a real benefit in a super-clear written explanation by the doctors.)

Oh – by “systemic” she means chemotherapy.

How did you know the lymph cancer was mucinous?  

She didn’t have the reports in front of her (note to doc:  buy a tablet), she said, but said mucinous was the histology of her ovarian cancer.  “These tumors aren’t known for being chemo-responsive tumors,” she said.  I believe she said the histology doesn’t change.

So, I said, are you saying that because Mom’s cancer, 11 years ago, was mucinous, and the histology doesn’t change, that this cancer must also be mucinous?  I believe she said yes, but she was on to a discussion that to my lay mind seemed unrelated, and hard to follow.

She said that chemo 11 years ago should have been done after Mom had had “everything visible cut out?”  I asked what she meant by “everything visible” (after all, Mom’s heart and other organs were “visible,” so surely she meant something more specific).  By “everything,” did she mean everything that looked problematic? That was my understanding.  I said that the original surgeon had spotted the lymph, but had left it there because he deemed it inoperable.  This is Mom’s memory, and she believes it’s in her diary, but one of her local doctors said the spotting of the lymph wasn’t in the surgical notes).

Dr. Denver pointed out that she couldn’t know what the doctor may have been referring to.

Should We Get Surgery to Remove as Much as Possible?

If we left some of the tumor behind, Dr. Denver said, “we’re not accomplishing much.  It will be all scarred in, it will grow back, and any attempt to resect will be even harder.”  As I did many times on the call, I restated this to her in different words to ensure I had understood it.  She went on:  “When you operate and disturb the natural tissue plain, you create more scarring.  If you have to go back in there again, it’s worse.”

“So you’re saying,” I said, “that if you go right up to the border of where you can cut safely, then when you are done that border will become scar tissue that’s harder to operate on in the future?  And that you’ll have scar tissue immediately adjacent to the aortic veins?”

“That’s right,” she said.

I asked about something called Insulin Potentiation Therapy, a form of chemo that uses a far smaller quantity of chemotherapeutic chemicals.  It’s also called “soft chemo”.

Insulin Potentiation Therapy

During my research, I had liked the idea of IPT (as Mom did), as it’s also called, but was not impressed with the dearth of science.  The idea:

It consists of giving a patient a dose of insulin followed by a tiny dose of chemotherapy.

Cancer cells have 15 times more insulin receptors than normal cells. The insulin dose helps to target chemotherapy into cancer cells because they have so many more insulin receptors. So small doses of chemotherapy can be used that cause little harm to normal cells. With Stage 1 or 2 cancer, IPT is, I read, about 80% successful, mixed results for more serious cancers.

I contacted a company called EuroMed and a doctor there got back to me this morning.  Ovarian cancer is very sensitive to IPT, he said – it’s the most sensitive of all cancers to chemo, but difficult to keep in remission.  It can get aggressive and resistant to treatment.  Almost every patient on IPT will go into remission, he said.  They frequently take patients in Stage IV, already sent to hospice care by their oncologists, who are now surviving five to seven years later.

The most important element for a patient’s prognosis is the clinical picture, he said.  He said it was very good that Mom felt well.  If she feels well with no symptoms, he said, she’ll do better with IPT.  “The way out [of cancer] is through a strong immune system, and that’s the key difference between IPT,” which aims to preserve the immune system, and conventional chemotherapy, which many say destroys it.

After Mom went into remission, he said, she would have her blood drawn monthly and be brought back for another “zap” in the case of “a flare”.  She’d be given unspecified oral supplements along the way.

Science, Alternative Therapies, and Follow-the-Money

What about scientific studies?  I’d been unable to find any original studies on the web, and only scant reference to any studies.  I heard from the EuroMed doctor a variation of the argument I see a lot these days when people discuss alternative therapies.  The arguments sometimes carry a conspiracy flavor that I find distasteful even if I can imagine them, in this case, being true.  They go like this:

IPT [or insert other potential cure] is opposed by big pharmaceutical companies (who are now people for purposes of lobbying, per the Supreme Court’s decision in Citizens United).  There is no money to be made in therapies that aren’t conducive to being patented.  If something can’t be patented (e.g., a plant essence), it can’t be sold at a high profit margin because others can sell it too, at low prices.  In the case of IPT, it’s not an entirely different therapy, but the small amount of chemicals used means little profit for pharmaceutical companies.

So big pharma, which allegedly (I have not confirmed this myself) funds the research hospitals that do all the studies, will not fund studies to prove the efficacy of competing, unprotectable technologies.  Doing studies properly costs a lot of money.  IPT [or other potential cure] providers lack the funding to do such studies themselves, and get no cooperation from university hospitals.  And doctors like the one from EuroMed, who do IPT, are oriented toward clinical work, not research, in their limited time.

In any event, the doctor asked for her biopsy report; her recent bloodwork (her CA-125 is currently a very low 52); and a recent scan.

Dr. Denver on IPT and Chemotherapy

I had just gotten the words “Insulin Potentiation Therapy” out of my mouth when Dr. Denver said, “Chemotherapy.  Anything else is just investigational.  She can do that, but it’s way outside the norm for what we would do for a recurrence of this cancer.”

When would IPT be appropriate? I asked.

“I don’t know what it is,” she said.  “It’s not something that would be used for ovarian recurrence.”

It’s clearly an alternative therapy, I allowed.  That she hadn’t even heard of it proved that much.  It was her job, of course, to focus on therapies with some research behind them.

“You’ve got to assume she will respond to chemo,” the doctor said.  She also said, of Mom, “She’s got multi-focal disease and is not a candidate for surgery”:  the systemic assault of chemotherapy was the solution to such a case.


What about doing the surgery in part to get out some of the tumor for a biopsy?

Surgery for the purpose of getting a tissue sample would be too invasive, she said.

But would you test a sample if you had one?

Sure, she said, for a chemotherapy-sensitivity assay.  There are a variety of them in use; some are good and some are not.  The University of Colorado Medical Center uses one called CARIS.

But you need a core biopsy, she said.  A certain amount of tissue.  And she was doubtful you could do that safely.  She concluded:  “I wouldn’t operate on her because it’s too much risk and there’s not an adequately identifiable benefit.”  This is the kind of language I look for.  It suggests she’s weighing both costs and benefits, and comparing them to one another.

She asked an oncologist in Grand Junction to contact us.  We’re going to set up an appointment with the Huntsman Cancer Institute at the University of Utah.