August 18, 1934 – September 30, 2009
Mom and I had many conversations in the 1990s about euthanasia. She was afraid of pain and did not want to suffer. I took a bunch of notes back then about what kind of service she would like, what to do with her body and such, trying to anticipate the kinds of information I would one day need. Eventually the topic slipped off the map.
When she went to the Emergency Room last spring, I began to watch and wait for her to let me know when it was time. I thought I was paying very close attention, but she fooled me for quite a while. I learned more about my mom’s parenting style in the last two weeks of her life than during the previous forty-six years. Through my childhood and adolescence, she had displayed no maternal instincts that I recognized. Her deepest lover, Albuquerque John, got it right: “You and your brother raised yourselves.” Whenever Mom told stories about how she had agonized over my brother’s and my safety, and felt our pain as hers, I was astonished at the disparity between our perceptions. I could not reconcile our respective versions of reality.
Abducted by Aliens
Mom called three weeks ahead of schedule to tell me she was ready to move from her beloved Albuquerque, NM to live the rest of her life with me in Amherst, MA. Within 72 hours, she was here. That very first night, I met my roommate in the hall at 4 am. “Did you just hear the front door?” he asked me. I had; what was going on? Mom burst back in. “Honey, we’ve been had!” She was in a state of total panic, convinced our lives were at stake. “That man” had made her sign a paper, and “they” were coming to get her. I tried to understand what was happening. The story she told was fantastic: a hidden life of crime, things done to her blood, how she would soon disappear without a trace. Over the next day and a half, she slowly came down from the double dose of prescription medications that she’d swallowed in an attempt to end the pain (of bone cancer, of increasing fatigue, of fundamental loss…). Mom had thrown me quite a curve! I wasn’t even looking in the right direction.
Call it Coincidence?
“If I had to say,” Mom explained to the social worker from The Hospice of the Fisher Home during the intake interview, “I believe in music.” Anticipating that I was going to need help at some point, friends had provided resources and I had done just enough homework to know who to call for help. Within hours of what looked to me like instant dementia, we had visits from the Clinical Director of the Hospice and from a representative of Elder Protective Services. Mom was reassured, “Massachusetts has the best protection in the country!” Between myself, my roommates, Hospice staff and a sweet neighbor, mom immediately had 24/7 companionship. It took a full two days to get Mom into the health care system, but by Wednesday evening she had suitable medication and proper referrals. Mom was lucid again, and it seemed we were getting the situation under control.
By Thursday afternoon the pain was back. My gaze was becoming clearer, but I still couldn’t see the ball.
or Carefully Coordinated Choreography
I didn’t tell Mom that she had called for rescue within a half-hour of my preliminary visit to The Fisher Home as I checked out potential (future) resources. I never expected Mom to qualify for palliative care so soon. While I was still in the mode of imagining us settling into some kind of home routine for at least a few months, the Hospice offered a couple of nights of respite care over the weekend, since the transition had proved to be so rough – and they happened to have a bed available. They were already gently facilitating my process as well as easing Mom’s. As Mom and I went to bed in my apartment Thursday night, Mom reassured me – despite my goof that had delayed a timely dose of painkiller: “Things are going to work out.” Of course I agreed, oblivious to the fact that our definitions of “working out” were hardly related.
The next shock came at the doctor’s office Friday afternoon, where Mom met her new primary care provider en route to the Hospice. “Not to be too blunt,” he said, after Mom told him in no uncertain terms that she wanted to die sooner rather than later, “but it’s going to happen. You’re going fast.” Cognitively, I processed the information, asking if he was talking about days or weeks. Emotionally, I could not absorb the answer: “Days.” At the Hospice, I said a teary goodbye to Mom, afraid she would die before I returned on Sunday but not believing it. I was also still struggling with my selfish desire for more time with her, despite her obvious and persistent clarity in not suffering the unendurable any longer. She made it through the weekend, relieved to be in good, constant care. Sunday and Monday were tough days, as no pain medication proved effective in catching up with or controlling the bone pain. Monday morning, one of the nurses explained that they were hesitant to start increasing the morphine because Mom was “still so alert” but all the alternatives were failing. As soon as they cranked up the dosage, Mom would begin to move closer and closer to unconsciousness.
Mom was calm as I explained the situation. I wanted her to agree that if we could find another way to control the physical pain, then maybe the emotional aspects could be addressed? “I don’t see any difference,” she told me, “they are mixed up together.” According to the Hospice guidelines for care, “Pain is what the patient says it is.” As long as Mom experienced pain, and told them, they would continue to provide medication. “It’s all done, sweetie,” she told me. Finally, I had caught up.
The Hospice Experience
Each nurse and care provider told me only as much as I needed to know, judging what they sensed I could comprehend, at each step along the way. The attention, time, and energy they provide to patients is extraordinary. Mom and I talked for hours over ten blurry days, sharing memories, moaning and groaning about the freaking pain, laughing, teasing apart selected biographical details, and choosing to leave others forever unexcavated. In the end, I realized how consistently Mom chose not to impose herself on anyone, how deeply she respected others’ autonomy – including that of her kids, and – ultimately – how much she was willing to suffer in order to honor these family values. She did her best to protect us all the way through to the very end.
I asked Mom what she felt was important in her own life. She answered seriously: “She sang.” I revisited the idea of a service, and Mom scoffed. “She did this. She did that.” I asked if she remembered the choral numbers she had mentioned before. “Those were sung at Mamma and Daddy’s funerals,” she explained. “Do you want to keep the tradition?” I was curious. She just snorted. Probably her most characteristic moment had already occurred. When I bid her farewell for that weekend of respite care, I told her that I was glad she had been my mom.
“I’m glad,” she replied, “that we straightened your teeth.”
by Boris Leonidovich Pasternak
As it had promised, not deceiving,
The sun pierced through morning and ran
As one bright slanted stripe of saffron
Across the drapes of the divan.
It covered with its heated ochre
The nearby woods, homes in the place,
My bed – and even my wet pillow, –
A patch of wall by the bookcase.
And I remembered why the pillow
Was slightly moist. That very eve
I dreamed you all came through a forest,
One after one – to see me leave.
You came in crowds, in pairs and singly,
And then someone was heard to say:
It is, old style, the sixth of August,
The Lord’s Transfiguration Day.
Usually a light that’s flameless
Comes from Tabor this day each year,
And autumn draws eyes to her beauty –
An omen, marvelously clear.
And you passed through the tiny, trembling,
Bare and beggared alders into
The graveyard’s red-as-ginger forest
Which burned like pressed-out cookies do.
Importantly the great sky neighbored
With those tall, calmed-down tops of trees;
The distance for some time had echoed
With sounds of rooster’s reveilles.
Death stood like some state land-surveyor
Amidst the trees in that stilled place
And scrutinized me for my grave size,
While looking in my lifeless face.
And everybody heard it really –
The quiet words of one nearby:
My former, clairvoyant self was speaking
Which no decay can falsify.
‘Farewell, blue of Transfiguration
And second Savior Day’s rich gold.
Soften for me with woman’s kindness
The bite this last sad hour can hold.
Farewell, years of prolonged stagnation.
And you, woman, let’s say goodbye –
You who challenged humiliation!
I am your battlefield and cry.
Farewell, spread of the wings out-straightened,
The free stubbornness of pure flight,
The word that gives the world its image,
Creation: miracles and light.’
translated and edited by Vladimir Markov & Merrill Sparks in Modern Russian Poetry, 1966
Brief ceremony to be held Tuesday, October 6, at 4:30 pm at The Hospice of the Fisher Home, Amherst MA. Join us there to nurture griefs and celebrate memories of your own loved ones, and/or come for dinner at Panda East (Amherst) (@ 6 pm). Mom loved sushi!
Obituary to be posted in The Albuquerque Journal, The Kansas City Star, The Denver Post, and the Mt Carmel Daily Republican Register (Illinois). Elaine was the oldest daughter of Roy and Rosaline Johnson of Mt. Carmel, IL.
Embedded: Requiem Aeternam by John Rutter
No gifts, please. Contributions can be made in Elaine’s name to the New Mexico Women’s Chorus, P.O. Box 40703, Albuquerque, NM 87106 or to the Samual W. Achziger Memorial Endowment Fund at World Learning, The Experiment for International Living, School for International Training.
c/o World Learning
Office of Philanthropy
1 Kipling Road
Brattleboro, VT 05302