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.
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.
* * *
It feels like you’re holding me here.
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.
“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
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.
* * *
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
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?
You’re not feeling a little angry or anxious or sad?
* * *
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.
Updated as of 5:15p.m., December 19, 2014