Four kinds of people

There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver. — Rosalynn Carter

Earl Fowler

I did a piece in this space a few weeks ago quoting descriptions by various authors of the joys of recovering from a serious illness.

Today I’m back at the literary apothecary, this time to compile a baker’s dozen of excerpts in which authors or their fictional characters reflect on the trials and tribulations of caring for gravely ill loved ones. Not a cheery topic, Lord knows, but a near universal one as we grow older and others sign up for the inevitable before we do.

1. “Tuesdays with Morrie: An Old Man, a Young Man and Life’s Greatest Lesson” by Mitch Albom

In this 1997 memoir, the popular sports journalist and talk show host reflects on his time spent with his former sociology professor, Morrie Schwartz, as Schwartz was dying from ALS (amyotrophic lateral sclerosis) — the cruel, unrelenting disease fought with satire, courage and determination by former blog colleague Susan Kastner before her death almost two years ago. We’ll get back to that. In Albom’s narrative, the act of caring for the seventy-something son of Russian immigrants becomes intensely personal and transformative for both of them:

The most important thing in life is to learn how to give out love, and to let it come in. … I am the last person you would expect to be teaching anyone about love. But I know what love is now. I know how it feels when you give it and when you receive it.

You might remember the 1999 television adaptation starring Jack Lemmon as Schwartz and Hank Azaria as Albom. Lemmon himself would be gone by 2001. Stage adaptations continue to be mounted.

2. “The Death of Ivan Ilyich” by Leo Tolstoy

Tolstoy’s 1886 novella is about a man diagnosed with a terminal illness. His family’s attitude comes off as callous and/or indifferent, reflecting the disconnection many experience with death waiting in the hallway:

The sickness had brought him to such a state that he could not imagine life without suffering. And yet, his wife, after a certain period of superficial care, would come and ask him, not for the first time, “Well, how are you? You don’t look at all well.” The expression of interest was there, but the essence of caring was absent.

Hate to sound like a Coles Notes summary here, but this passage really does highlight the superficiality of care that can sometimes accompany fatal illness, especially in cases where those around the dying person are uncomfortable with death. When my mom was nearing the end, I spent a lot of time sitting next to her bed, looking up words in a French-English dictionary. It was absurd, but neither of us knew what to say beyond the obvious expressions of empathy and sympathy. And then what? Grim endurance. Helplessness. Hopelessness. Hemming and hawing and waiting in awkward silence. Which brings us to:

3. “The Hours” by Michael Cunningham

In the 1998 novel The Hours, the lives of a fictionalized Virginia Woolf, Laura Brown and Clarissa Vaughan are intertwined in themes around death and the impact of illness on the people who care for others. There’s a poignant moment when Clarissa reflects on the care she’s giving to her friend, Richard, who is dying of AIDS:

The truth is, she has been living with this, for a long time now. Richard is dying, and she is living. She is, at times, a bit too tired to continue, but there is love in her care. Not just responsibility, but love. A love that is measured in hours, in gestures of help, of understanding, and in waiting. It’s all she can do.

I’ll do you one better than a Coles Notes recap on this one. Woolf’s multilayered 1925 work Mrs Dalloway, the basis for Cunningham’s story, is largely about Clarissa Dalloway’s fear of death: her own and the demise of others, including that of Septimus Warren Smith, a First World War veteran suffering from PTSD who ultimately jumps out of a window to his death. Who hasn’t felt what she’s talking about here, particularly when our own sense of, um, existential finitude has been jolted by watching the light dim and fade away in the eyes of a friend, a lover or a relative?

[T]he dwindling of life; how year by year her share was sliced; how little the margin that remained was capable any longer of stretching, of absorbing, as in the youthful years, the colours, salts, tones of existence. … She had a perpetual sense as she watched the taxi cabs, of being out, out, far out to sea and alone; she always had the feeling that it was very, very dangerous to live even one day.

4. “The Notebook” by Nicholas Sparks

Pubished in 1996, Sparks’s debut novel revolves around Noah and Allie, whose love story extends over decades (until they go from looking like a youthful Ryan Gosling and Rachel McAdams to elderly versions of James Garner and Gena Rowlands). In the later stages of Allie’s life, she suffers from Alzheimer’s disease, and Noah becomes her primary caregiver:

He reached for her hand, taking it in his. It was warmer than he remembered, softer too, and he held it in his own, feeling the comforting presence of her touch. He kissed her fingers and gently stroked them, knowing that this was all he could give her now — this simple, unwavering devotion, and the memories they shared.

It ain’t Shakespeare, but this excerpt does at least hint at the tenderness and emotional depth involved in caring for a spouse or a partner with a terminal illness. I witnessed this with my own father’s love for my dying mother. Later he would trim the grass on her grave with scissors. Crazy. And yet.

I finally understood what Whitman was getting at when he wrote about “the beautiful uncut hair of graves.”

5. “A Man Called Ove” by Fredrik Backman

In 2012’s Swedish novel A Man Called Ove, the protagonist, Ove, is a grumpy old widower (well, old if you think 59 is old) who has lived through beaucoup d’hardships. Surtout, his grief in his role as a caregiver to his wife, Sonja, during her hideous battle with cancer:

He would sit with her for hours, holding her hand, sometimes saying nothing at all. He didn’t need to say anything. He knew what she needed — he just needed to be there, and he did it. And when she could no longer speak, he would tell her stories. Stories of their life together, because she had asked him to.

Sometimes the most meaningful acts of caregiving are those of simple presence and shared history, even when words are no longer meaningful and meaning is no longer conveyed in words.

6. “The Book Thief” by Markus Zusak

In 2005’s The Book Thief, Hans Hubermann becomes a caregiver for his wife, Rosa, as she battles an illness. The devotion, however imperfect, is especially affecting in this story of human resilience set in Nazi Germany during the Second World War:

She’s tired, Hans knows it. He knows it well, but he doesn’t ask her to stop. He doesn’t ask her to do anything more than she’s already done. He knows she’s done enough, but the way he looks at her says the opposite. His face is full of something else entirely — something that can only be described as love.

Sometimes the look of love is in the other direction, as when the soon-to-be-bereaved partner can’t accept what’s happening and frantically begs the dying person to hang on, to do more than he or she still has the capacity to accomplish. The end of Paul Simon’s song “Darling Lorraine” always chokes me up, maybe because I can so easily see myself in the ineffectual husband:

Darlin’ Lorraine Please don’t leave me yet I know you’re in pain Pain you can’t forget Your breathing is like an echo of our love Maybe I’ll go down to the corner store And buy us something sweet Here’s an extra blanket, honey To wrap around your feet All the trees were washed with April rain And the moon in the meadow Took darling Lorraine

7. “A Grief Observed” by C.S. Lewis

This 1961 chronicle is C.S. Lewis’s raw reflection on his grief after the death of his wife, Joy Davidman, due to cancer. In it — initially published under a pseudonym because Lewis wished to remain anonymous in this one — he recounts his experience of caring for her and ponders the profound emotional toll it took on him. On the day that John F. Kennedy was assassinated, Lewis himself would succumb to kidney failure two years later at age 64 :

The pain of the world is the only real pain. That we are all aware of, in spite of ourselves. But for me, what is new is the vividness of death. She is dead, she’s gone. I knew she was dying. I knew it every day she was here. But the dread of the event made the reality almost bearable. Now she is gone, and I am left to face it — the loneliness, the weight of the absence. I sit here now, remembering her smile as she lay in that bed, fighting not to be a burden. And I think how impossible it was that she ever felt that way. How she was always so brave, how she always gave me so much when all I could give her was my presence. But that, at least, was something. I do not know how I could have lived through it without it.

Once a King in Narnia, always a King in Narnia.

8. “The Remains of the Day” by Kazuo Ishiguro

This 1989 novel features Stevens, an English butler, ruminating on his life and his role in caring for his former employer, Lord Darlington, as well as his deep, unspoken feelings for his colleague, Miss Kenton. As Stevens, who greatly resembles Anthony Hopkins pining for Emma Thompson in a cinematic universe near you, looks back on his life of service, he contemplates the nature of duty, care and emotional restraint:

I suppose it could be said that what is often most difficult about having to look after another is the helplessness you feel in the face of their pain. One might be able to do anything for a person except ease their suffering. I have spent my life attending to others’ needs — looking after the well-being of my employer, maintaining the dignity of the house — but never have I felt so powerless as I did when Lord Darlington, despite all my care and service, remained bound in the grips of his declining health. Even now, in these quiet moments of reflection, I realize the full weight of my failure to intervene, to offer him something more than just my silent, dutiful presence.

Sometimes, all the care in the world feels insufficient in alleviating the suffering of someone you truly care for (even one with Nazi sympathies). Often, it is.

9. “The Year of Magical Thinking” by Joan Didion

In 2005’s The Year of Magical Thinking, consummate essayist Joan Didion delineates her experiences of caregiving and grief after the death of her husband, John Gregory Dunne, and the prolonged illness of their adopted daughter, Quintana Roo. Didion’s meditations on the fragility of life, the randomness of illness and the peculiar nature of grief are as poignant and on point as the counter-culture dissection that made her a sensation in the 1960s:

The night before John died, I made sure his oxygen was on. I checked the hospital bed, adjusted the pillow under his head, and watched him breathe. I went through the motions — this was the routine now, the grim dance that had begun months before when the disease started its slow, inevitable work on him. But it wasn’t just the physical care I was providing; it was something else, something I couldn’t articulate at the time. I wasn’t only watching over his body. I was trying, in some irrational way, to protect him from the death that was already on the other side of the room, hovering, waiting. And when it came, I was still caught in the rituals of the moment — what else could I do? I had no other language. I didn’t know how to say goodbye.

Of all the books listed here, I would say this one and Didion’s 2011 companion book Blue Nights, about the death of her daughter, comprise the best extended meditation I’ve come across on mortality, time and what the author calls Blue Nights — those long evening hours around the summer solstice that constitute “the opposite of the dying of the brightness, but also its warning.”

Didion is especially good on the hospital routines familiar to anyone who has cared for a terminally ill loved one. And on how suddenly everyday existence can fall apart:

… all had seemed well when we were shaking the water off the leis (at Quintana’s wedding) onto the grass outside St. John the Divine on July 26, 2003. Could you have seen, had you been walking down Amsterdam Avenue and caught sight of the bridal party that day, how utterly unprepared the mother of the bride was to accept what would happen before the year 2003 had even ended? The father of the bride dead at his own dinner table? The bride herself in an induced coma, breathing only on a respirator, not expected by the doctors in the intensive care unit to live the night? The first in a cascade of medical crises that would end twenty months later with her death?

Twenty months during which she would be strong enough to walk unsupported for possibly a month in all?

Twenty months during which she would spend weeks at a time in the intensive care units of four different hospitals?

In all of those intensive care units there were the same blue-and-white printed curtains. In all of those intensive care units there were the same sounds, the same gurgling through plastic tubing, the same dripping from the IV line, the same rales, the same alarms. In all of those intensive care units there were the same requirements to guard against further infections, the donning of the double gowns, the paper slippers, the surgical cap, the mask, the gloves that pulled on only with difficulty and left a rash that reddened and bled. In all of those intensive care units there was the same racing through the unit when a code was called, the feet hitting the floor, the rattle of the crash cart.

If you’ve been through this with a parent or a partner, the memory is painful, the sense of powerlessness palpable. But for it to happen to your child? Didion, who died herself just before Christmas in 2021, hammers away at a harrowing theme throughout Blue Nights:

When we talk about mortality we are talking about our children.

10. “The Bell Jar” by Sylvia Plath

In The Bell Jar, Sylvia Plath’s semi-autobiographical novel from 1963 (when it was originally published under a pseudonym), the protagonist, Esther Greenwood, reflects on her depression, the care she receives and the sense of disconnection from her body. Although the story is primarily about mental illness, it also touches on themes of caregiving in the context of Esther’s treatment.

My mother visited me in the hospital. She seemed so strong, so capable of dealing with what was happening to me. But I could tell, from the way her hands trembled when she touched my face, from the way her eyes flicked away from mine when she thought I wasn’t looking, that she was terrified. She sat beside me for hours, holding my hand, but the silence between us was something I couldn’t bridge. I could feel her wanting to say something, to offer me some kind of reassurance, but she couldn’t. And I couldn’t ask her for it. I felt as though we were both trapped — me in my body and my mind, and her in her grief for me. She couldn’t understand what I was going through, and I couldn’t explain it. So we sat there together in that space of incommunicable pain.

Esther’s mother is physically present, but emotionally, they are both in a place neither can share. Plath’s suicide occurred less than a month after the book’s appearance.

11. “Of Mice and Men” by John Steinbeck

In Of Mice and Men, George Milton cares for his mentally disabled friend Lennie Small. The relationship is one of love and sacrifice on both their parts:

George’s voice was monotonous, had no emphasis. “I seen hunderds of men come by on the road an’ on the ranches, with their bindles on their back an’ that same damn thing in their heads. Hunderds of them. But not us! An’ why? Because I got you to look after me, and you got me to look after you, and that’s why.”

George’s decision at the tragic end of the 1937 novella lays bare Steinbeck’s conviction that sometimes it’s justified to end a life to forestall an even more terrible fate.

12. “A Marxist Exegesis of ALS” by Susan Kastner

Three days before the longtime Toronto Star columnist died at home in Toronto on Nov. 24, 2023, the 84-year-old phenom (whose career spanned several newspapers including the Globe and Mail, advertising, books, songwriting and movie and stage scripts) made her one and only appearance in Neurology.

The respected, peer-reviewed research journal is usually devoted to clinical commentaries rather than fanciful conversations between the exasperated brain and implacable body parts of an ALS patient. But devising a typically innovative way to express what was happening to her was how Susan rolled, even in the final months of her illness. This is part of her essay:

TALKING BODY DISUNION If you want more body power, let me tell you what to do Got to talk to the parts in the body shop with you Got to build body disunion, got to make it weak If you all stick together till the brain can’t speak You’ll get shorter hours Better working conditions Freedom to dribble Freedom to let things fall Freedom to take your time Fall off your feet Lie down on the job, Show the Brain who’s boss! MUSCLES: YAHHH! Send in the twitchies! 2, 4, 6, 8, time to mass-fasciculate! GUT: And this one’s for you, capitalist-contagion brain! my SUPER-special ALS EVFM …ExtraVileFartMissile. ... the nuclear fart to end all farts ...! The theatre rocks with exploding green flares. A noxious miasma permeates all: like rotting limburger crossed with mustard gas and week-old teen hockey socks. House lights come up to reveal the first two rows of spectators slumped lifeless in their seats; the rest stampeding to the exits, frantically clutching coats to faces. The stage is bare. Brave Body has taken out Boss Brain, but in doing so, has sacrificed itself on the rebarbative ramparts of revolution. The EVFM has vaporized them both. As the house lights dim, a tinkly DISEMBODIED VOICE chants: Hearken, medics, to our thesis, Peace in the corpus Or the corpus in pieces …

This might strike you as a tad on the frivolous side under the circumstances. Antic, even. Ludic, comic, eccentric. But as Susan — who was diagnosed with late-onset ALS in June 2022 and characterized herself as “what you might call a red-diaper granny” — tells us at the outset:

Although I have taken refuge in humor and satire — my coping mechanisms of choice — the truth of this small slice of daily ALS life can be attested to by any similarly afflicted reader. And may prove enlightening for those fortunate enough to be spared.

The “legendary wit and beauty,” as the Writers Guild of Canada called her in a tribute, was seeking to enlighten the medical profession. She was certainly enlightening regular caregivers like you and me. But above all, she was speaking on behalf of the afflicted — the loved ones whose terrible suffering we are desperate to palliate. And sooner or later will join on the other side of the gurney. Irrealism as the sacred path to clear-eyed realism.

13. Then We Were One: Fragments of Two Lives by Fred A. Reed

I am reminded at this point of a passage in the 2011 book Fred wrote about his family and his own remarkable journey of discovery after the death of his younger brother, Jim, who never recovered from the soul-withering things he experienced in the Vietnam War.

I’m using Fred’s given name — as I did Susan’s — because I was privileged to know them both a little via emails and mostly through this blog, to which the three-time winner of the Governor General’s Award for French to English translation also contributed until his passing less than three months after Susan’s, at about the same age.

Early in 1985, Fred and his wife, Ingeborg, were back in California, where he grew up, as his father was dying:

My father and I sat down together on a sunlit afternoon by the sliding door that opened onto his tiny garden. In the twenty-five years that had elapsed since I had turned my back on home and country, we had rarely spoken, never intimately. Methodically I sidestepped his attempts to explain his funeral arrangements; turned aside my gaze from his last will and testament.

“Fred, I don’t want to live any longer,” he said, looking me in the eye.

Our normal mode of communication was banter; the family style, to parry the thrust. That afternoon, stunned by his directness, I spoke not a word of demurral.

Father’s time had come, he told me.

That night a massive stroke brought him down as he attempted to reach his bathroom. The brain damage was irreparable, his physician told us. He would never walk again; never speak again, his mind a shadow of itself.

“Let him go,” we instructed the doctor, who uttered not a whisper of objection. Perhaps he could have survived, a prisoner of his aged body, on intravenous drips and tube feeding. But that would have been torture. I had heard his living will.

He lingered for several days as his vital systems gradually ceased to function. Ingeborg and I visited the hospital, held his hand, whispered to him. On a table in his apartment, next to the sliding door, stood a small arrangement of houseplants, slightly larger than bonsai, which he had cared for lovingly over the years since his wife’s death almost two decades before, in 1966, a living memorial to her and his mute companion in solitude. As we were eating a quick breakfast before my regular morning visit we noticed that the plants had collapsed, all of them.

“Your father died early this morning,” the duty nurse told me as I hurried onto the ward.