November 8, 2014

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

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

“Four-and-a-half,” Mom said.

My mother is a connoisseur of pain.

* * *

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

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

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

* * *

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

“What’s a dump?” I ask.

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

* * *

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

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

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

Could this be a new level of acceptance?

* * *

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

* * *

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

* * *

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

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

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

“You’re cooking now!” Peggie says.

I laugh. “I’m boiling.”

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

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

“I will regret one thing,” I say.

“What’s that?”

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

* * *

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

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

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

* * *

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

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

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

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

* * *

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

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

* * *

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

Mom is crying.

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

Mom mumbled that it would be nice.

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

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

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

“Teal,” Mom says.

“Teal?”

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

* * *

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

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

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

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

* * *

Mom wants the marijuana cream to put on her bedsore.

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

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

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

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

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

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

“Enhance what, Mom?”

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

And so we do.

* * *

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

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

* * *

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

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

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

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

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

Grace: You have such a beautiful connection to her…

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

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

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

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

* * *

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

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

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

* * *

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

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

* * *

November 9, 2014

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

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

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

* * *

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

* * *

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

* * *

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

“Water therapy?”

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

“How what, Mom?”

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

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

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

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

She says that isn’t possible.

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

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

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

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

* * *

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

* * *

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

That, too, surprises and impresses me.

* * *

November 10, 2014

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

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

“I know, Mom.”

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

Oh, Mom.

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

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

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

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

She didn’t respond.

* * *

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

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

“I know, Mom.”

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

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

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

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

“I’m not ready to go now,” she says.

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

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

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

* * *

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

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