Mother, father, and little brother on USS Constitution, ca 1963
Care giving. Care taking. Giving care. Taking care. Caring for children. Caring for animals. Caring for my parents. My parents’ caregiving. Where to begin when there is no end? Rather than yield to the maelstrom of endless possibilities, I want to explore what care means when you can say goodbye… and when you cannot.
What does care mean when you can say goodbye? And when you cannot?
My father departed abruptly at a time when we were the farthest apart we had been since the fissure began. I had been seven and, as if predicted by old man Freud, my old man began to grind down on me because I had begun to step on an imagined umbilical cord that connected him to my mother. Twelve years later, I was exiting my teens and working in an economic research and action project run by Students for a Democratic Society (SDS), three blocks south of South Street in South Philly. My old man had driven with me to the bus station six weeks earlier. I wonder if I was as contemptuous of him as I recall: While I bought my ticket at the station, he bought me a paperback off the bus station’s squeaky bookrack, Frank Norris’s 1899 novel, McTeague, the story of a San Francisco dentist and his clumsy descent into personal tragedy. In retrospect, I was fed up to my eyes with his every mannerism and I was probably hiding any anticipatory dread — I was leaving home after leaving college for a year off — behind a broad, unfocused anger.
So, when I was sitting around with my organizing cadre in that SDS flat one hazy, humid summer afternoon, and my mother called, “you better come home, Charlie, Johnny just killed himself,” I had no idea that I’d be shadow-boxing with his spirit for the rest of my life. Ghostly embraces, even out of fatigue, have been rare. You see, I had been driven to care for him, indirectly but inexorably forced to defer to his needs. Kids have a strong sense of injustice, and I’d gotten tired of fighting for air. Of course, then I think about all that he gave me: a love for and full faith in science; a smart, sarcastic sense of humor; a universally applicable understanding of how things worked — Newtonian physics and Copernican astronomy, the planets, the solar system, the stars, the galaxy, the other galaxies, the internal combustion engine, the basics of thermodynamics, hydrodynamics, electricity, levers, wheels, and inclined planes, saws, augurs, ratchets and hygrometers; a love for Mark Twain, Walt Whitman, and the great American liars and storytellers; a grasp of the march of history and the class struggle and a reverence for resistance and revolutions. All those qualities give weight to my bones right along with the whys and the relentless void left by the slow build to his rapid and deliberate departure.
In contrast, long before my mother became afflicted with ALS, I was determined not to lose her with any wounds or mysteries left open or unresolved. She responded to my explorations with equal curiosity and determination; we worked hard together, she and I, to right past inequities between caregiving and receiving, and to turn over the debris left behind by the dissolution of the family. My mother had refused to live as the widow Degelman in the small town she had raised us in. She’d come solo to New York before she met my father and she left solo for New York after my father’s death.
We crossed the continent, alone together after my graduation. We maintained a loose but interactive relationship in San Francisco. We talked of the family, our upbringing, they ways she tried to hide and denied the realities of my father’s sickness, our childhood hopes and fears, her inescapable role as caregiver. She listened to descriptions of childhood and expressed her own anger and surprise at the different ways we had experienced our early years together. For all my sense of abandonment and lack of support, she described her love for me and confessed that I had been her favorite, not a great gift to bestow on any child but she meant it and I felt it.
Now, with my siblings scattered, we had the freedom to support each other’s changes — she reconnected with her west coast family, began teaching in Bay Area public schools after re-educating herself at NYU. She carried out her progressive work with efforts to bring justice to Ruchelle Cinque McGee, a Black Panther and participant in the Marin County courthouse rebellion of 1970. She continued her work in environmentalism, something she had begun in the 1950s after reading Rachael Carson’s The Silent Spring. She was courted by several boyfriends, all quite smitten, she was a very attractive woman, but her primary responsibility was to her young son, ten years my junior. After he began navigating a ragged course to independence, she lit out for the highlands, the Sierra foothills. She taught for another five or six years and bought a house in Jamestown which is odd for several reasons.
First, her ancestors landed in the Jamestown colony in Virginia sometime in the mid-1600s. Now she’s back in Jamestown in Tuolomne County and living with a nature photographer named Merle. Decades earlier, she had met my old man at a photographer’s meeting in New York. He had spilled beer on her hat. Good way to get acquainted. Two weeks later, they got married — for better and for worse; in sickness and health.
My mother and nature photographer Merle enjoyed a terrific late-life relationship, roaming around the west, hiking and taking pictures. After Merle suffered a heart attack and subsequently died in his sleep one night, my mother moved to Davis to be closer to Bay Area family. She took up residence in an eco-habitation designed by my cousin. There she flourished again, until she began to suffer the first symptoms of ALS.
She was misdiagnosed as having strokes. That made her angry. My mother hated being disbelieved. She’d had a lifetime of it as a woman a priori. In fact, she was right; the doctors were wrong. Having lived 10 miles south of some of the largest agribusiness factory fields on the planet, she had developed a fatal vulnerability to pesticides, the enemy she had first encountered when I was a kid and she was feeding a family. Sometimes I’d open up my lunchbox at school to find a cottage cheese and lima bean sandwich on brown bread. The other kids all had peanut butter and jelly or marshmallow fluff sandwiches and a devil dog for dessert. What’s a poor boy to do except try to look cool about it?
But the throat control worsened, and she kept cursing the crop dusters that she could hear, but not see, that she could feel, as the agrafarm toxins settled into her eyes, ears, nose, throat and lungs. About that time, we convinced her to move to a place she had chosen back in San Francisco.
My friend John helped me move her out of the Davis condo. 9/11 had just happened and we needed to get her settled by October. We made it, despite the fact that she would only spend time sorting books. She’d stand before each of many bookshelves, contemplating. The place was good, she liked it, but it was becoming impossible for her to swallow. My mother had sworn by Kaiser since the early postwar days, when Kaiser Medical began as a benevolent corporate giant, Henry J, put millions into the first try at single-payer health insurance. Since that time, Kaiser had become an imperious bureaucracy. Soft-voiced female gatekeepers guarded the regulations with deferential cruelty. I worried about how the immigrants who sat quietly in the plastic chairs of every waiting room ever managed to be cared for at all. I had to use all my brains, my entitlement tools, and my absolute determination to care for my mother in a way I was never allowed to care for my father.
My mother lost her speech. When she could no longer swallow, she began to lose weight. She submitted to the indignity of having a shunt inserted for nutrients. She was thin but strong and clear-minded. I would sit with her for hours, both of us writing on a pad. We tried me talking and her writing, but the crisscross of communications lacked flow and tempo, so we both wrote. It was like sitting by a river, to sit with her and write. She slowly descended and I made a weekly pilgrimage from job and Los Angeles home to San Francisco to join my brother in advocating for her continued care at Kaiser and fighting to keep her out of a nursing facility and safely ensconced in her assisted-living condo. The last time I saw her standing, she did a dance as the elevators closed.
My father never said goodbye, never gave me a chance to say goodbye to him. My mother and I made sure that we did. When the time came, under a full moon, while a massive anti-Iraq war protest lit up the city, I held her hand, listened to her breathing slow. When her heart stopped pumping and her vessel collapsed, I watched my mother’s spirit climb in an agile wisp up and through the ceiling.
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Charles DegelmanWriter, editor, and educator based in Los Angeles. He's also played a lot of music. Degelman teaches writing at California State University, Los Angeles.
Degelman lives in the hills of Hollywood with his companion on the road of life, four cats, assorted dogs, and a coterie of communard brothers and sisters.
A very powerful story about care giving and care taking. Those of us who have been on Retrospect for a while knew about your father’s suicide from “Johnny never said goodbye…” and other stories. And we knew a little bit about your mother too. But this story tells us much more, about them and about you. It is hauntingly beautiful. I think I will read it many times. Thank you for sharing it with us!
Thank you, Suzy. Perhaps I dug a little deeper than usual on this one, always a good process for me as a child, a parent, and a writer.
Charlie, your mother may have lost her voice, but you surely have not and have caused me to react with mine; great long sobs, sitting at the computer in the silence of my home this morning. Your writing is always strong and powerful, but this has moved me in ways that I can only try to express to you.
As Suzy said, we knew about your father’s abrupt end and lack of goodbye, but little of your mother beyond your wonderful recent piece about your ancestry. It is good to know that she thrived after your father’s departure and had happiness and fulfillment. Also, that you maintained a close relationship with her. Your final sentence is pure poetry, under the full moon, vessel collapsing, mother’s spirit an agile wisp climbing. Such a beautiful image of the love you two shared.
Your piece made me re-evalute my own situation with my two parents. I truly loved my father, I barely tolerated my mother (about whom I wrote this week). My father moved to Laguna Hills, CA after divorcing my mother in 1981. It wasn’t easy to find time to visit him. I was either working full-time, or I had small children. I asked him to come visit, but he had given away his winter clothing. So we visited a few times, and he visited us a few times after the kids were born. He died, suddenly, of a heart attack, alone in a hospital in 1990 at the age of 76, having had a mild attack a few days earlier, but didn’t tell us because he “didn’t want to worry the kids”. He was full of warmth and love and compassion.
As you’ve read through the years, my mother was insecure and needy, caustic and critical. My brother and I were by her side as she lay dying (though she died overnight, so we were not there exactly at the moment she died). Though she was in a life-care community in the Boston area for the last 15 years of her life, I was the person in charge and took care of during that time. I made all her decisions, including during the 6 final days of her life, after she had the cerebral hemorrhage from which she died. But before saying goodnight on that last night, I did lean over to her ear and whispered that I had taken care of everything for this final passage and that I loved her. So I felt that I completed our unfinished business. It is not beautiful and poetic, but I felt a sense of calm.
Thank you, as always, for the beauty of your words and sharing your personal stories with us.
Thanks, Betsy. I’ve always thought that the audience, not the actor should cry. I’m glad that my work could help you do your work! Thank you for taking the time and care to express your feelings, not just about my experience, but about your own. When we’re surrounded by chaos in the outer world, it seems fitting to take time to explore the inner worlds and words we all carry.
Charles, as always I’m in awe of your beautiful, insightful writing, and gratified to see how you’ve made peace with both your parents’ lives and deaths.
Bravo storyteller, am looking forward to reading Bowl Full of Nails.
Thanks, Dana, for your kind and supportive words. I calculate I’m a little over halfway in my journey to understand my origins. As with the cosmos, we can only look back, whether it be through recollections or light years.
I look forward to hearing your thoughts on A Bowl Full of Nails!
C, I think it’s too late to count in light years!
Hoping to start Nails now that we’re all spending more time in social isolation!
Ha! Too late for all but the cosmologists who, for all their science and technology, can only look backward. Yes, truly we live in mad times, with grocery shelves emptied of hand sanitizer. We’ve only begun to experience where nature, pushed to her limit, will take us. I also have a vivid image of the current New Yorker in my mind’s eye: An orange-complected Trump with a protective mask over his eyes and his mouth wide open! Gawd, are we living in a time or what!
Yes I have that cover in front of me. Used to think, May you live in interesting times, was a blessing. Since 2016 I understand why it’s a Chinese curse.
Will we survive?!?
I’m always intrigued by the Rashomon of family, how each person’s version is their truth, as is the case with you and your mother and the differing takes on your early years together. Your vivid description of the gifts your father gave you and your complex relationship with him in competition for your mother’s attention is tangible, and so are the very moving visions of you and your mother writing to each other in person, and her dance as the elevator doors closed. Thank you for sharing such a tender, fierce story, Charles.
‘The Rashomon of family’! What an apt and universal description of family perceptions. Thanks for your kind an caring words!
This story brought tears to my eyes, Charles, it’s so beautifully written. I love the image of “I had gotten tired of fighting for air.” It’s comforting that you and your mother got to make a journey together. My father died 19 years ago, within months of an illness, but I did have a chance to say goodbye. My mother is still doing well at 92. We have had a difficult relationship but have worked through a lot of issues, and now we can say “I love you” and mean it. Thanks for articulating this for all of us.
Thanks, Marian. You response prompts a sense of responsibility if that repetition makes any sense. As I commented below to Betsy’s response, I learned in the theater that the audience should shed tears, not the actor. Although there’s always more passageways to explore in any family labyrinth, I have been able to see more clearly at this stage what had been so impactful in my younger years. There’s an odd line from the raucous tune, “Gimme Some Lovin'” by the Spencer Davis Group. “So glad we made it.” I often find myself singing that refrain!
I was really touched by your catalog of all of the things your father gave you despite a rocky relationship. My father was similar in that he was very bright and shared his passion for art, history, and genealogy. While he lingered in a nursing home after a botched back surgery that we begged him not to do at age 90, I never got to say goodbye. Your description of your mother and your long goodbye took my breath away. As always, so beautifully written.
Thank you, Laurie. Yes, that knowledge and skill-set ‘catalog’ (good description) rattled right off onto the page. In contrast to my father experience, my mother and I both resolved not to surprise each other. We began working on our retrospect (such an apt term) years ahead of her demise, not so much in preparation for that, but because of mutual love and curiosity. Worked out so well in contrast to my father experience.
Thanks for including the link back to this story. What a journey! It’s remarkable how we think we have broken free from family only to find they continue to stay with us in unexpected and persistent ways, which may teach us if we listen. Both your parents sound like strong and talented people in their own ways. Your connection to your mother was beautiful.
Yes, they do stay with us and allow us — if we are determined enough, to continue learning from and/or about them and their presence inside us. Thanks for reading.