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

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

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

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

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

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

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

 

 

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10 thoughts on “Das war die Grenze

  1. Inge – I don’t even know what to type. I love you my friend. You were there when I began this journey and you inspired me and so many others. Now it is our turn to be there for you. xo

  2. Your Mom is such an inspiration! I met her on facebook , never met her -you cannot help but love her
    Yo are all always in my prayers -it is so sad how much suffering some people have to endure . Give your mom a big warm hug for me <3

  3. Meine liebe Inge,
    Du bist in meinen Gedanken. Es tut mir so leid das es Dir nicht gut geht.
    Ich drücke Dich von ferne ganz fest.

  4. Dear Inge: I am sending you love, light and courage on your journey.
    Pain and worry – you are more than that.
    Despair and sadness – you are more than that.
    Hard days and long nights – you are more than that.
    You are a bright, shining spirit in this universe.

  5. Cameron, this was the most painfully honest and therefore true thing I have read in a long while. Our culture gives us so little to draw on to prepare ourselves for death, your words have value. I am grateful to know some of your reality even from afar. The love and acceptance in your soul is really something else. Please hold your insights close and write when you want, I am overwhelmed by the gratitude and peace in you and I want to hear more. I got nothing for you, no insight to share, I only write to send my love and admiration.

    • Rachel, I can’t tell you how much your message touched me. The words, as well as their source. Those words mean a great deal, coming from you. I hope to keep writing; in fact, I told my mother just today that she would one day be famous, her inspiring story spread far and wide, when I finish the book. I’d mentioned the book a few days ago, and joked about a movie, and she’d said, “Who will play me?” “Meryl Streep,” I’d said. “And she could do your accent.” This time, she looked at me very intently, a slight smile playing on her lips. Measuring each word out slowly, she said, “If you say so.” As far as she was concerned, it was as good as done. Generosity like yours, Rachel, will help me to keep my word.

  6. Cameron, my heart is with you. I know you write because you must, but the sharing is a gift to us. Thank you for the reminder to gratitude, to love, to family, to life’s ways–the beautiful, the horrible, the temporary. My love and appreciation to you both.

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