Dying Lessons

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1.

My mother sat in the entrance hall of her assisted living residence when I arrived.  Her Barbara Bush white hair was brushed neatly, her gnarled toes overlapped in the Clarks sandals she had settled on after returning countless pairs of shoes that hurt her feet.  She smiled and said, “You’ll never guess who I got a belated ninetieth birthday card from.  Jan Carmichael. Forty years later and she still carries the torch for your brother.”  I steered her wheelchair into the dining room.  As I sat beside her, she made no effort to raise her fork.  I began to feed her as I had my babies, a mother bird waiting for her to open wide so I could place the food in her mouth.

“You’re really pushing those carrots, aren’t you?” she said.

After she’d eaten half the meal, we went up to her room and chatted for awhile.  “You should go home to your husband, dear.” she said, “Take me back downstairs; it’s too early for me to turn in.”  After settling her beside the grand piano in the living room, I bent to kiss her cheek.  Then I walked into the entry hall and through the wood door with the smoke glass window.

The phone rang the following morning.  “Your mother’s eyes are open, but she’s not responding,” the nurse said.  I raced to her residence.  The white emergency van with the gold bubble on top waited in the circular drive.  In her room, my mother lay on her side, gazing at nothing in particular.  “Hi, Mom,” I said. “It’s Carroll.”  Her eyes did not move.  As the two attendants prepared to lift her onto the stretcher, I thought about those unfocused eyes.  Dark chocolate irises that had flickered with amusement when she’d told my teenage daughter, “If you don’t like my peaches, don’t shake my tree.”  Those eyes, I remembered.   Her dead eyes on the psych ward I had forgotten.

2.

In 1937, Italian neuropsychiatrist, Ugo Cerletti, developed the idea that using electricity to shock a person might aid in the treatment of severe schizophrenia. He had noted that when pigs were given a shock before being butchered, it anesthetized them. Once Cerletti began human trials, he discovered that after 10 to 20 treatments of placing two electrodes or paddles on a person’s forehead, depressed patients had much improved. Early electroconvulsive therapy (ECT) caused such violent convulsions patients sometimes broke bones or fractured their spines. Electronics technology advanced. The primary adverse effects of ECT, confusion and memory loss, remained. Former patients and psychiatrists criticized shock therapy as a brutal way to control mental patients. Until more effective drugs became available in the late 1960’s, it continued to be widely used in hospitals throughout the United States.

3.

In the summer of 1964, my mother received her first shock treatment when hospitalized for depression at Western Pennsylvania Psychiatric Hospital. Her every-other-day ECT continued for six weeks.  Following discharge, she could not remember the name of my then teenage sister or on which road she lived.  In a few months, her memory returned.

While in social work graduate school two years later, I traveled home for Easter break. My mother’s room at Western Psych returns to me now as if it were a dream.  She sits in a gray Johnny.  Her beauty shop permed hair lies matted and flat against her head.  From the beige pleather chair, she stares with eyes dull as her faded Johnny.  The previous summer I had been engaged to a young man with curly blonde hair and a lop-sided smile.  During a visit home, my mother had cornered me and warned, “You don’t have to marry the first man who asks you.”  I now sit on a dark wood chair opposite her, no longer engaged to the blonde man, struggling to write my thesis. In my memory, I don’t remember us speaking of those things.

Yet the hospital room can reappear.  When I allow the fuzzy recollection of the visit, I envision my mother’s eyes, open, but not seeing.  Like the black discs in the kitsch paintings of waifs marketed by Walter Keane in the 1950’s, her dead eyes dominate her face.

4.

While in college, I decided women either became like their mothers or they turned themselves into their opposites. I had watched my mother give her power away before I was old enough for school. On Election Day, she’d ask my father, “Dave, who are we voting for?”  I thought she was silly she couldn’t decide that on her own. She did not raise a fuss when my father bought a farm without telling her. He planted a half acre garden and expected her to can and freeze vegetables all summer long. My mother would threaten on occasion, “Someday we’ll drag up already canned jars from the cellar and line them up on the kitchen counter.  The old boy won’t be able to tell the difference.”  I knew that wouldn’t happen. My mother never stood up for herself.

Following my father’s dictum that “A penny saved is a penny earned,” I tracked my dollars, unlike my mother who never looked at a price tag or wrote her check transactions in the register.  I challenged my Bible School teacher when she did not count the Apocrypha, the collection of ancient texts found in sections between the Old and New Testaments, in her number of books in the Bible. I was responsible; I made sure I was heard. I would not be like my mother.

5.

Fifty years after my mother’s first hospitalization and fourteen years after her death, I Googled electroshock therapy. I was ready to understand more about her ECT treatments. On my screen, a small wooden box emerged, perhaps fifteen inches square. It contained gears, bolts and other black paraphernalia. A white cord stuck out one side and was attached to a headset with two white disks.

If I had envisioned how a psychiatrist administered my mother’s shock therapy, I would have guessed with a contraption large, menacing, similar to encasing a body in a Magnetic Resonance Image machine. The photograph of this puny ECT box troubled me:  Was this the machine that zapped my mother?  I typed “electroconvulsive therapy modern machine.”  Up popped a white metal box.  A circular dial was situated on a periwinkle blue panel to the left on the front, a round plug like the connection to my laptop jutted out of the right.  The machine resembled a kid’s record player capable of spinning 45 rpm vinyls.

In front of my computer, I imagined my way into my mother’s experience.  What did she feel when the attendants arrived to escort her to her first shock treatment?  Had anyone explained what was going to happen?  Were her thoughts so disordered from the depression that she could not process where the attendants were taking her?  I see my five-foot-two-inch, hundred and twenty-five pound mother, lifted onto a hard table in perhaps an operating theater or maybe in a small colorless room.

Because the word “mild’ is used in conjunction with the relaxant administered, I deduce that she was awake when she heard a masked nurse order her, “Open your mouth.”  A hard guard now gripped her teeth, perhaps making it difficult to swallow the spit collecting in her cheeks.  She must have felt sharp tightness when the nurses fastened restraints around her wrists and ankles.

In other articles during my Google search, I learned that the brief infusion of electricity that causes the generalized seizure erases any recall of the shock treatment. The recipients wake confused and unsure where they are. Former patients write about feeling as though chunks of their lives have disappeared. What ran through my mother’s mind when she awoke in a foreign room?  If she had no memory of a treatment, had her alarm been the same after each shock treatment?  My chest heaved, my breathing wheezed through my nostrils as I sat and conjured her eyes when she regained consciousness, fearful as the cow’s on the farm I had seen laboring to deliver a breached calf.

6.

After several hospitalizations, doctors diagnosed my mother manic-depressive as she had two hypo-manic episodes when she talked too fast, slept too little and had the energy of a whirling dervish. Mostly my mother descended into immobilizing depressions where she wrung her hands until raspberry red, drank Lord Calvert whiskey until she passed out. Then back to the hospital where she was re-shocked.

Once she developed bipolar disorder, the thought that my mother’s mental illness genes might lurk within me must have been terrifying. But since we were so different, I suppressed that fear.  My mind stalled like brown on a fallen oak leaf before I could explore what those shock treatments meant to my mother, what they might have meant to me.

Living in New England, I avoided seeing her when she was again hospitalized.  During my infrequent visits home, her demeanor was flat, without a spark of life.  She no longer felt like a mother to me, rather a pathetic person I needed to tolerate.  My mother’s in-and-out-of-the-hospital routine continued for nine years.  Then the unexpected intervened.

7.

Australian psychiatrist John Cade discovered the use of lithium salts to treat mania in 1949.  While attempting to isolate a metabolic compound that might be useful in treating the symptoms of schizophrenics, he used lithium urate in rats and found it tranquilized them. Soon Cade was prescribing lithium salts to people and succeeded in controlling mania in chronically hospitalized patients. The rest of the world was slow to adopt this treatment as deaths had occurred from relatively small overdoses. As researchers in Denmark and the United States confirmed lithium’s effect on stabilizing mania and depression swings, resistance to its use slowly fell away.  The US FDA approved the application of lithium to treat mental illness in 1970.

8.

In 1973, my mother sat in a crushed velvet blue chair in my Cambridge home when she visited my husband, toddler daughter and me. “My doctor is going to prescribe a different medicine for me,” she said. “It’s new and not many people have used it.”

I wish I had believed she would no longer careen through her depressions and her marginally stable periods. But I dismissed the idea that some psychiatrist my mother had found would make that much difference in her life. Yet when I recall our conversation, I hear the eagerness in her voice, remember her face uncharacteristically pearl pink and her eyes glowing as if lit by a candle.

Lithium saved her. My mother’s periods of depression disappeared. She borrowed books from the library, babysat grandchildren, lunched with her friends and volunteered at The Cancer Society. She seemed to forget about the shock treatments and what those debilitating periods were like for her, as though her car had no rear view mirror. For several years I kept expecting to hear she was again in the hospital. But in time I began to think of her as the mother I knew before she was diagnosed manic-depressive. I, too, erased my memories of her ECT.

9.

Ten years later, my mother’s neat, print-like handwriting turned wiggly, her gait became uneven.  Diagnosing Parkinson’s disease, a degenerative disorder of the central nervous system, a neurologist added Synthroid and Sinemet to the lithium from her psychiatrist and to pills prescribed by other doctors treating her blood pressure, her heart irregularity. The medications did not interact well. My mother gashed her head against the door frame when she went to the bathroom in the night. She shorted out the phone when she spilled water on it as she lurched through her apartment where she lived.

She was about to turn seventy-seven when my brother who lived near her called. “I’m drowning here.  I need some help,” he said. My mother’s falls had increased, her weekly pill organizer was dotted with missed dosages and she often seemed confused. After I flew to Pittsburgh, I took charge; I got her hospitalized and explored resources nearby, then decided to look for a place near me. I found a retirement home with nursing support five minutes from my house.

At her first doctor’s appointment after her move, my mother sat with her hands clasped on her lap. The physician asked what she wanted most.  She said, “I‘d like to take fewer pills.” The doctor lined up her arsenal of medications on his desk.  With one swipe, he dumped more than half the bottles into the trash can. A woman emerged who spoke more clearly, shook less and rarely fell.

Surrounded by caretakers, without needing to cook a meal or keep track of her meds, my mother came into her own. Her sense of humor won over the nursing aides, the kitchen help, the desk clerks.  She prepared for her doctor’s appointments as though they were dates, rehearsing entertaining things she might say. When she was eighty, she was telling her podiatrist a joke when he detected a vascular blockage in her leg.  She asked what would happen if she did nothing. The podiatrist showed her tiny spots of gangrene on her toes and said she would lose a leg.

I drove her to Boston for her surgery, her medical chart noting DNR in bold red letters on her lap. As she was functioning so well, I said, “Mom, are you sure about this Do Not Resuscitate order?”

“I’m not in a hurry to go, but when I go, I want to go in a hurry,” she said, a quip she repeated often in the following ten years. In 1990, before living wills and advance directives were common, my mother had her plan.

At age eighty-five, an aortic root dissection ripped her heart; her prognosis was dire. I rushed to her hospital room. She smiled and said, “I have been lying here planning the music for my funeral.” After several touch-and-go months, my mother returned to her assisted-living apartment.

With the progression of the Parkinson’s, her falls became more frequent. The ambulance took her to the community hospital to be examined. As I pushed back the curtain in the ER, she’d say “Carroll, remember, no extreme measures.”

“Mom, you’re just here to be checked out,” I’d reply. “You’re fine. I won’t forget.”

Then a month before the phone call telling me she was not responsive, the nursing director at her residence determined my mother, no longer able to dress herself or push her walker to the dining room, needed to transfer to a room with three other women in the nursing home section. My sister and I moved her to an assisted-living facility nearby where she could live in her own room with added support.

Unable to follow my mother at her new residence, her physician wrote to those responsible for her care. He described her very strong beliefs about resuscitation. She had always refused Pneumovax believing that pneumonia was the old woman’s friend and had turned down blood transfusions when she had a bleeding ulcer from gastritis. When I read the physician’s letter, I marveled at this woman who had refused medical options.

Three weeks after she turned ninety, I received the nurse’s phone call. My mother had suffered a stroke. Once she was settled in her hospital room, her eyes flashed anxiety when roaming the room and landing on my sister and me. She garbled sounds indicating she was desperate to tell us something, but she could not process what anyone was asking her. The following day she lay unconscious. The doctor explained her brain might be swelling and offered the comfort care option. An IV would administer morphine for pain, but fluids would be minimal. Over the course of a day or two, my mother’s kidneys would shut down, a painless way for her to die.

I wished I’d had a fire drill or two to prepare me for how to handle this dilemma. What was my mother trying to tell us? Was she saying, “Fix me. Don’t let me die”?  I needed to tell the doctor what we wanted to do. Then, as if hands had grabbed my shoulders, I shook myself. “I am not in a hurry to go, but when I go, I want to go in a hurry.” My mother had given me a gift. I dared not refuse it.

Throughout the next day we sat beside where she lay, eyes closed.  An IV dripped morphine into her arm. Around four o’clock in the afternoon, my mother’s eyes opened, but she stared beyond us. Her brown irises looked blacker, close to matching her pupils. Gone was the hint of a laugh, gone the deadness of depression. At six-thirty, as sunlight filtered through the shades, my mother shut her eyes for the final time.

10.

As I have moved into my Medicare years, I begin to think about dying. I have had few health problems, each resolved quickly. Yet physical issues may crop up at anytime, I know. Do I have the strength my mother did to face what lies ahead?

I think about the years she fought depression. In 1971, not long after I’d had my first baby, my mother turned over the photographs of her grandchildren on the fireplace mantel and swallowed all her pills. She was barely breathing when she arrived at the hospital. Once alert, she said, “I couldn’t face another day.” Death did not frighten her. She had been up close to it before.

I question now: did her ECT treatments and her mental disorder fortify my mother? Much of the time during those nine years, she appeared affectless, at the mercy of spiraling depressions. Was she marshaling forces I did not detect? After lithium stabilized her, she coped with Parkinson’s which robbed her of easy mobility. Her “go along to get along” attitude served her well as she adapted to and survived each health crisis. Yet in her later years, she seemed determined to work the hand she was dealt.

How did she become so clear about when she wanted to die?  I imagine her observing Dorothy who dressed in flared skirts like Loretta Young and played Gershwin tunes on the piano in the carpeted living room until she began accusing the aides of stealing her jewelry and disappeared to the nursing home section. She recounted how her friend, Marian, suffering from chronic diarrhea and no longer able to digest food, told her, “It’s time to go.” Admiration lingered in my mother’s voice. Then the nursing director at her residence said she needed more care and my mother moved to the new facility. She was dead in less than a month. She knew her exit cue.

11.

In 2013, Katy Butler wrote Knocking on Heaven’s Door, a memoir about her experience with doctors who refused to remove a pacemaker from her father who was severely disabled from a stroke and dementia. The father had been a brilliant college professor but had suffered a stroke when he was seventy-nine. Though he had recovered some functioning, his speech and mental acuity were quite compromised. Doctors suggested a year later that he needed a pacemaker to stabilize his heart, but no one explained that the pacemaker would keep his heart strong while his dementia increased. Several years later as his condition worsened, Katy and her mother asked that the pacemaker be removed, but doctors refused. When Katy’s mother developed serious health problems after her husband’s death, she made different choices and despite doctors offering more medical treatment, she declined.  In Dr. Atul Gawande’s book, Being Mortal, he described a different path he and his father together chose as his father’s health was failing: to prioritize what was most important to him as the end of his life grew closer.

12.

My mother rallied after blocked artery surgery and her aortic dissection, but she had not pursued measures that might interfere with nature taking its course. She had refused blood transfusions, never agreed to pneumonia shots. She knew death would come to us all. By not fighting the inevitable, she let go and went in a hurry.

I look to my mother to learn her lessons. If I imagine myself in her shoes; undergoing ECT, periods of dreading each new day, years of maneuvering her walker, I feel her determination as never before. When she was slightly older than I am now, I witnessed her changing from a dependent woman who had relied on her husband to tell her how to vote to one who was going to call the shots. Can I too change as I age?  Can I forsake needing to be in control and allow my body to tell me when it is time to let go?  Perhaps when I am eighty, I will choose to forego pneumonia shots, add DNR in red capital letters to my medical chart. I want to believe I can become as fearless as my mother.

Photo:“Say good-bye room” by  zeitfaenger.at ; licensed under CC BY 2.0 [spacer height=”20px”]

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