Best Books About Caregiving--Fiction and Memoir

There are lots of books to tell you how to be a caregiver—books for spouses, siblings and adult children.

There are specialized books for caring for someone with Alzheimer’s or cancer or Parkinson's Disease etc. But sometimes you want or need more than a how-to book, and more than the facts—you want to know about the feelings, and to know how someone else felt when they were where you are. And for that we have to go to literature.

I teach a class on the Literature of Caregiving, and I have found that these are those are the kinds of books that caregivers crave and relate to. These are the books that often answer the questions that no one knew that they needed to ask.

So, here are some of my favorite books about caregiving. You’ll have some surprises I’m sure, but caregiving is nothing new to humankind, and great works of literature touch all situations and all of the feelings that make us human.

 

Caregiving Memoirs:

Autobiography of a Face, Lucy Grealy

Cancer Vixen, Marisa Acocella Marchetto (It’s a graphic novel)

Midstream, Le Anne Schreiber

Landscape Without Gravity, Barbara Lazear Ascher

Truth and Beauty, Anne Patchett

The Story of My Father, Sue Miller

Low Down: Jazz, Junk and Fairy Tales. AJ Albany

The Broken Chord, Michael Dorris

Operating Instructions, Anne Lamott

Three Dog Life, Abigail Thomas

The Best Day/The Worst Day: Life with Jane Kenyon, Donald Hall

The Two Kinds of Decay, Sarah Manguso

 

Caregiving Fiction:

We are All Welcome Here, Elizabeth Berg

A Patchwork Planet, Anne Tyler

Celestial Navigation, Anne Tyler

Anna Karenina, Leo Tolstoy

King Lear, William Shakespeare

Add a few of these to your Winter reading. On the couch, in bed, and in your caregiving tote for doctor's offices and waiting rooms. You’ll be in good hands, and good company.

The Best Books About Caregiving

There are lots of books to tell you how to be a caregiver—books for spouses, siblings and adult children. There are specialized books for caregiving for Alzheimer’s or cancer or MS etc. But sometimes you want or need more than a how-to, and more than the facts—you want to know about the feelings. And for that we have to go to literature.

I teach a class on the Literature of Caregiving, and I have found that these are the books that people crave and that often answer the questions that no one knew they needed to ask. 

So, here are some of my favorite books about caregiving. You’ll have some surprises I’m sure, but caregiving is nothing new to humankind, and great works of literature touch all situations and feelings that make us human.

Caregiving Memoirs:

Autobiography of a Face, Lucy Grealy

Cancer Vixen, Marisa Acocella Marchetto (It’s a graphic novel)

Midstream, Le Anne Schreiber

Landscape Without Gravity, Barbara Lazear Ascher

Truth and Beauty, Anne Patchett

The Story of My Father, Sue Miller

Low Down: Jazz, Junk and Fairy Tales. AJ Albany

The Broken Chord, Michael Dorris 

Operating Instructions, Anne Lamott

Three Dog Life, Abigail Thomas

The Best Day/The Worst Day: Life with Jane Kenyon, Donald Hall

The Two Kinds of Decay, Sarah Manguso

Caregiving Fiction:

We are All Welcome Here, Elizabeth Berg

A Patchwork Planet, Anne Tyler

Celestial Navigation, Anne Tyler

Anna Karenina, Leo Tolstoy

King Lear, William Shakespeare

Add a few of these to your summer reading. You’ll be in good hands. 

The Literature of Caregiving: Tom Lubbock and Marion Coultis

It is not often that we have both patient and caregiver as extraordinary writers. And while often sad and hard stories we learn so much by being able to see both sides of a cancer story. Even a story unto death. 

This month I read a pair of memoirs that give us this perspective and some new language and eyes into a cancer patient and cancer caregiver with books by Tom Lubbock who was Chief Art Critic for London’s Independent newspaper. Tom was diagnosed with brain cancer in 2008 and died in 2011. His book, the chronicle of those three years until days before he

died, is “Until Further Notice, I am Alive.”

His wife, the artist and writer, Marion Coutts, wrote her book, “The Iceberg” through and after that same time period. Hers is the parallel story of the diagnosis, surgeries, hospitalizations and, for both of them, the heartbreaking complication of raising their baby son, Eugene.

What many of us who love words, reading, books, and arguing our point is the injustice and indignity of Tom’s particular cancer which was situated in the language center of his brain. The wonder and strange thrill of his book is reading him as he is articulating what language means and what it means when a writer is losing language. You would think: “too morbid”. But no.

These books, Tom’s and Marion’s, are slim and carefully crafted. These two are such fine

writers so I encourage you to read both, together and side by side. Do you see how each one describes the same day? What does it look like to him? To her? How they see the world includes what they see, as they see each other, even how they see death.

From Marion: “A palliative nurse came to see us at home in the autumn of 2010. She said, ‘On a scale of one to seven, how would you rate your quality of life?’ There was a long pause while we digested this madness. Tom, slightly absent, lightly bored, said thoughtfully, ‘That’s a ridiculous question. Obviously we go—“Oh God” all the time, at all the stuff to be done. But generally it is wonderful. We are interested.”

From Tom: “Mortal. We occupy a limited patch of space for a limited patch of time. Like the art of realistic paintings: pictures hold an equivalent in the confined areas which they enframe, and the brief narratives they represent…We know the deal. We’re bodies. We are not in our own hands.”

Marion’s life continues. Tom’s life does not. But these books do. And what they “enframe” for us is wisdom, self-compassion and love. And this thing that we all do until death—we try to put life into words.

The Literature of Caregiving: Me Before You

Me Before You by Jojo Moyes. Sound familiar? Yes, you’ve seen it on the bestseller list in the New York Times and your local paper. You’ll see (mostly women) reading it on the bus and subway, and at the movies you have seen the poster for the movie version coming this summer. Yes, it’s a chick flick and a romance novel, but what you may not know is…

“Me Before You” is a caregiver story. And while being a romance and yes, teary at times, it is a complex and powerful caregiver story. This novel shows the complicated layering of both family and professional caregiving.

A young woman takes a job out of necessity and becomes a professional companion to a relatively young man with quadriplegia. He is cared for in his parent’s family home and there is paid medical care, PT and other services. So we see a full surround of professional caregivers and how they interact with each other and with the family.

But despite comfortable means, and lots of help, caregiving is still a challenge because of the pain of illness and disability, and because of the human heart. Moyes shows us two people helping each other, and how hard it is to love fully and selflessly.

While readers will be caught up—and I was—in the engaging love story, we are also allowed to observe the very daily and hard, specific details of physical and emotional care demanded of the caregivers. 

This story will land in front of you soon—as book, CD or movie. Here is another full cast of caregivers making imperfect lives while loving and growing. This is the perfect book to introduce the “what if’s” of caregiving and long-term care planning to your family, friends or book club.

***

The Literature of Caregiving is a monthly series at Love in the Time of Cancer. The first installment is December 8 2014--with "Home" by Marilyn Robinson.

The Literature of Caregiving: Cancer Vixen

Graphic novels—also called “comics” --have become so popular with readers of all ages that many bookstores have stopped segregating them on a single shelf and now integrate them with traditional books and related categories: fiction, nonfiction, parenting, health, memoir. 

This year Alison Bechdel’s graphic memoir, Fun Home was adapted for Broadway and became the Tony award-winning Best Musical of 2015. So it makes sense that graphic novels and graphic memoir are having a moment. So we can find them in the Literature of Caregiving and The Literature of Cancer genre.

One of the graphic/comic cancer books that I especially love is Marisa Acocella’s Cancer Vixen. Acocella had long been a cartoonist for The New Yorker, Glamour and Modern Bride magazines when she took a flying leap and wrote a book about her experience with breast cancer. 

Diagnosed just a few months before her wedding, Acocella provides a powerful visual story about getting the news, her changing relationship with her fiancé/husband, and the trials of treatment and the terror of being uninsured. 

Acocella also includes her dilemmas dealing with shoes, clothes, lipstick, girl friends, shopping and tribulations at her job, making it one of the funniest and most honest cancer stories. It is a mad combination of Girly-Girl advice and fierce advocacy.

Another graphic (in every sense) book about cancer is “Cancer Made Me a Shallower Person” by Miriam Engelberg. Engelberg was a cartoonist living in San Francisco and her book is a memoir created by a series of comics that take us through her cancer journey—first diagnosis, treatments, family, workplace, second diagnosis, more treatments and her internal reactions.

A couple of things set this work apart from Cancer Vixen: unlike Marissa Acocella, Engelberg was not a trained cartoonist, but her outsider-naïve style lends an air of vulnerability and immediacy to the work. Unlike Cancer Vixen, Engelberg’s book does not have a happy ending. She died a few months after the book was published.

Both of these books are funny and inspiring. At the center of each story is a view of the ways that many of us react to difficult things. For Acocella and Engelberg it’s cancer, for you or a friend it could be divorce, aging, trouble with kids etc.Yes, there is humor in these stories, as well as pain and hope and honesty.

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The Literature of Caregiving is a monthly series here at Love in the Time Of Cancer. 

The Literature of Caregiving: Siblings as Caregivers

At some point each Christmas morning the telephone rings

and hearing the phone I think happily, “Oh, that’s Larry 

calling to say Merry Christmas”-- as was his habit for 

twenty-some years since we left home in our teens.  Then 

smiling, rising from chair or bed to reach for the phone, I 

drop my hand. I remember. This cannot be Larry calling; 

Larry is dead.

I am the youngest of five and have watched as my older brothers and sisters became ill. I was the caregiver to my brothers as they went through long illnesses and then died. For one brother I was the nearby, hands-on caregiver, for the other I was the long-distance, travelling caregiver. Both versions are hard.

One of the things I have learned going through this kind of loss so many times is that there is surprisingly little consideration for siblings as caregivers and siblings as mourners. Siblings are not considered primary mourners; they are expected to assist the primary mourners: parents, spouses and children and then get on with their own lives. But sibling illness and death is often more traumatic because of it’s very unexpectedness.

When I began this education in caregiving I was taking care of my brother Larry, and soon after his illness began my brother Sigmund was diagnosed with ALS. I was beside myself with grief and also with logistics. It took a long time to find my role and my voice with doctors and in hospitals and with all the related support staff. I can marke my learning how to be a caregiver with each visit to the hospital with Larry—and there were so many.

What also helped me enormously were two books by sibling caregivers. First, “Landscape Without Gravity” by Barbara Lazear Ascher—who in 1993 wrote about taking care of her 31-year-old brother Bobby who was dying of AIDS. She writes of his care, understanding his

relationships and then the grief—collective, familial and personal that consumed her.

Le Anne Schreiber’s book, “Midstream” was written earlier but came to me later. Schreiber writes of sharing caregiving duties with her brother as they care for and prepare for their mother’s death. Her book is more of a journal, that depicts the interplay of siblings—back and forth—as

the caregiving duties mirror Schreiber’s love of fishing for trout.

The love and pain of brother and sister in that book brings back to me my appreciation for a condolence note that I still cherish.

She wrote:“The loss of a brother is so terrible because we played with them and fought with them and expect to have our children do the same with theirs, and we expect them to be there and to help us when it is time to bury our parents. Losing a brother is losing both your past and your future.” 

I remember when I was in the first grade learning about The United States from one of those wall sized maps that are common in elementary classrooms, the ones that show each state as a different color, and I remembered the first time we went on a family vacation and how disappointed I was that all that distinguished the next state was a sign saying, “Welcome to Ohio” and Ohio was not blue as my classroom map had shown. 

 I was older, but similarly disappointed when, after my sister Joyce died, I discovered that the stages of grief that I’d always read about were not clearly recognizable. Instead I found that I could be angry and happy and sad and in and out of denial and find acceptance and then be depressed all over again. I believe that it is our fear of death that makes us want to organize grief, make it shape up, get in line and have specific manageable moments.

“I am so sorry about your loss”.  I always thought that “losing a loved one” was a euphemism used by people who were afraid to say the word “dead”. But after losing my brother Larry I know that “lost” is not a euphemism but the perfect word to describe the feeling that follows a death.

Though he died years ago, my feeling about Larry is that I have misplaced him; It’s that 

sensation of knowing that my book or my glasses are around here somewhere…if I could just 

remember where I left him.  There is a sense of something just out of reach, still here, but 

also gone. 

I think this is why we are so hard on the grieving. The world loves closure and to have 

things sealed and settled. But death and grief are not as final as we would like. 

                     

This is why it is a great surprise to find that grief contains such a broad range of expression.  

What I have learned is that death ends a life but not a relationship. And that is why, on 

Christmas mornings, I still rise and reach for the phone. 

***************

The Literature of Caregiving is an occasional series on this blog. See other entries on
December 8, 2014, January 16, 2015, February 17, March 23rd, and May 1st 2015.      

Before I Go

The plot for this book seems clever: A young woman is diagnosed with a terminal cancer and has just a few months to live. Before she dies she wants to find a new wife for her husband so that he will be happy and cared for after she dies.

That seems the conceit for a chick flick, right? You can imagine: feisty heroine, selfless love, and the requisite funny, sidekick best friend who is in on the plot. It’s all silly but sad matchmaking, and even a “Terms of Endearment” sad Mom as well.

And in Colleen Oakley’s first novel, “Before I Go”, all of those elements are present. You

might even assume, as I did, that this would be a relatively light-hearted (it’s always relative with cancer and death) book. And it does start out that way.

But then, the writing takes off as the story gets tougher and our happy (dying but sassy) heroine begins to show us the realities of knowing that you are really, really dying.

A scene that I loved: She is telling us about the romance novels that she watched her mother read when she is growing up and how she just assumed that as she got older and her hair got gray that she’d read romance novels too. But then it hits her, “But my hair won’t gray. And my skin won’t wrinkle and I may die without having ever read a romance novel….and this, this! is what makes me start to cry. And it occurs to me that if I were to write a “Coping with Terminal Cancer” pamphlet, this is what I would cover. Not the obvious stuff about anger and bargaining but crying over bodice rippers in a suburban mall at 10am on a Monday morning.”

And the search for her husband’s next wife? Oakley takes us from a silly conceit to the depth of mixed feelings for both partners when a spouse is dying of cancer.

I definitely recommend, “Before I Go.”

The Literature of Caregiving: Lucy Grealy and Ann Patchett

Welcome back to the monthly series: The Literature of Caregiving

This month for “The Literature of Caregiving” I bring you two great memoirs and two great writers who happened to also be two wonderful friends. The writers Lucy Grealy and Ann Patchett met in graduate school at Iowa and lived and wrote and struggled and laughed and grew together. They bonded over all the things young women friends do: school, writing, ambition, clothes, men, parties, worries, money and what do be when they grew up. They both decided on Writer.

When I teach Lit of Caregiving or a memoir class I like to assign pairs of books for students to consider and Lucy and Ann are the perfect pair to examine subject and style and content.

Both are wonderful writers and both –eventually—wrote about tragedies. Lucy’s tragedy was in her own life and Ann’s tragedy was her friend Lucy’s life.

Lucy Grealy’s story is cancer—Ewing’s sarcoma at age 9 leading to years of radiation and chemotherapy and then a long series of reconstructive operations, most of them unsuccessful. Her face was destroyed and recreated and lost again as many of the bone grafts didn’t “take” and her facial bones were gradually absorbed, then rebuilt and then gone again. 

Lucy’s stunning book, “Anatomy of a Face” is about her cancer experience but much more about her experience of having and losing a face. She wrote about beauty and how we

perceive it and how it is to be attractive and then to not be and then maybe …and not again. The book describes the physical pain and the emotional pain but primarily she wrestles with meaning and beauty.

Ann Patchett met Lucy years after the original cancer but in the midst of Lucy’s repeated surgeries and reconstructions. (There were 38 operations altogether). She was Lucy’s roommate, neighbor and later—for many years—her caregiver.

That is a caregiver model we don’t often talk about—the good friend who is a caregiver --sometimes in person and sometimes long distance and who goes through the medical crises. But also—as in this story as Lucy’s life devolves into alcohol and pills and ultimately heroin, a caregiver of someone with the disease of addiction.

We forget sometimes in our caregiver world that caring for someone with an addiction or a mental health diagnosis also counts. Those are not the caregivers asking for Family Leave at work or raising their hands at conferences for caregivers. There is still too much shame and stigma. But those may be some of the hardest working, most stressed-out caregivers.

And that is all in the story that Ann Patchett tells in her book, “Truth & Beauty—A Friendship” about her years of being Lucy’s friend and then her caregiver and then having to survive Lucy’s death to be her eulogist.

Incredible stories yes, but also extraordinary books because this pair of books are written by a pair of stunningly talented writers. Lucy was also an award-winning poet, and Ann’s many novels include: “Bel Canto” and “The Patron Saint of Liars” among others.

The incredible testimony to Patchett’s book and to her writing skill is that even though the subject matter is harrowing, “Truth & Beauty” is also uplifting and inspiring as it examines friendship and love and the lengths to which one might choose to go in being a caregiver.

*****

To read more installments of The Literature of Caregiving see past posts on December 8 2014, January 16, 2015, February 2, 2015. And sign up to receive this blog-Love in the Time of Cancer in your email.

The Literature of Caregiving: Jane Kenyon and Donald Hall

Welcome back to The Literature of Caregiving:

Jane Kenyon and Donald Hall: poets, lovers, husband and wife. Both had cancer. Donald, much older, lived. Jane, much younger, died. But, both being poets, they had the habit of turning their life experiences into poetry. So we have poetry collections from each of them describing each turn and phase of their roles as caregivers and as patients.

It’s fascinating to read their work side-by-side and to trace the intrusion and trajectory of cancer through their loving—and sexy—marriage.

I read the book, “The Best Day/The Worst Day” by Donald Hall. It is the story of the last year of Jane Kenyon’s life, her death from leukemia, and the story of their relationship, and a marriage of two writers. 

I am interested in writer’s lives and especially in how two writers lived together doing their work, and making lives as freelance writers and teachers. But I also read Hall’s book because I have also known since attending Bennington that his story is also the story of losing Jane and grieving that loss. 

My first year at Bennington was the year after Jane’s death and Donald’s readings that year and the next were of his poems/letters to Jane after her death. He was a grieving man.

Each year when Hall came to Bennington to read the perspective was different—the love always so strong, the advocacy fierce, but his point of view changing, enriching, deepening.

I know that I re-read this book to look into the face of grief and death. I also was clear that I started at the back of the book, the ending and the postscript because I wanted to see right away what Donald would say about Jane’s death. He is then writing ten years after Jane’s death. So I know he has survived. That is both my hope and my fear. 

Donald Hall cared for Jane for 15 months: chemo, bone marrow transplant, all the horrible side effects—many of them familiar to me now: weakness and sore mouth and hair on the pillow and in the sink. Hall describes the process of dying and the feelings of loving someone who is very sick and then dying.

I can feel the howl when they are told leukemia is back and there is nothing more to do. Jane dies eleven days later. Hall loves her so much but he is clear about not trying to make her death harder for her by loving her in a way that might make it harder for her to let go into death. I’m moved by the selflessness of loving in that way. 

Later I read, “Unpacking the Boxes”, another memoir by Donald Hall. This one is written 14 years after Jane’s death and in it Hall recounts much of the story that he wrote in “The Best Day/The Worst Day”…but now he is farther from it and he reveals even more.

What strikes me was how much he missed being her caregiver. The details of daily caring for her in leukemia were so hard and he was the primary caregiver day and night. It meant connection through the best and the worst.

After she died he missed her of course but he was surprised that he also missed the hard, tiring work of the physical care for her. That I understand too. There are days when I know I am benefitting from John’s cancer. It’s a connection and a unique way of being in relationship. No one would wish for this but I am aware that it is a gift of sorts. It sets a strong priority and it makes a bond.

But I also make this note to myself: One of the reasons that Jane’s death is such a shock to Hall and Kenyon and feels so unfair is that Donald Hall was 19 years older and he had colon cancer years earlier that had metastasized to his liver. They had already been through CancerLand with Hall’s surgeries, chemo, cancer recurring—all of it his. And then the sharp, unexpected turn: Jane gets leukemia and she dies one year later.

The other thing that Donald Hall—quite bravely—writes about in “Unpacking the Boxes” is the way his energy became sexual. He describes his sexual fantasies and his sexual behavior while Jane is dying, and after her death. He shares the voracious fantasies that would flow thru him and how, after her death, he acted on them.

Here is a poem by Jane Kenyon written when she was ill:

    I saw him leaving the hospital

    with a woman's coat over his arm.

    Clearly she would not need it.

    The sunglasses he wore could not

    conceal his wet face, his bafflement.

    As if in mockery the day was fair,

    and the air mild for December. All the same

    he had zipped his own coat and tied

    the hood under his chin, preparing

    for irremediable cold. 

                        Coats, by Jane Kenyon

And here is a poem, “The Painted Bed” by Donald Hall:

Even when I danced erect
by the Nile’s garden

I constructed Necropolis.

Ten million fellaheen cells

of my body floated stones

to establish a white museum.

Grisly, foul, and terrific

is the speech of bones,
thighs and arms slackened

into desiccated sacs of flesh

hanging from an armature

where muscle was, and fat.

I lie on the painted bed

diminishing, concentrated

on the journey I undertake

to repose without pain

in the palace of darkness,

my body beside your body.

--Donald Hall

[The Literature of Caregiving is a monthly series here on Love in the Time of Cancer--you can read previous installments on December 8, 2014 and January 16, 2015]

The Literature of Caregiving: A Happy Marriage by Raphael Yglesias

I’m a writer and a reader, yes. But sometimes I feel so amazed and wondrous at finding a story in fiction that is so perfect for my life.

Years ago I discovered “A Happy Marriage” by fortuitous accident. We were leaving on our honeymoon; I needed a book for the flight to Paris. I grabbed a new paperback from the shelf at my local bookstore. The title seemed perfect: “A Happy Marriage”. Almost themed for us and for me. Strangely it turned out—almost too perfect.

Yes. “A Happy Marriage” by Rafael Yglesias. It was his fifth novel. He also wrote “Fearless” which is one of my favorite movies—which also has a changing marriage as its theme. But in this book, the “happy marriage” is a stunning tale of cancer and caregiving and marriage and mystery.

“A Happy Marriage” is, to a degree, based on Yglesias’ own marriage. The courtship, love affair, struggles, rejuvenation by cancer and finally devastation—all in love—happened to Yglesias when he cared for his wife who died of cancer. But he is a great fiction writer and he used those life experiences to expand on and pull out and push in layers of ideas about marriage and illness.

This novel is perfect in CancerLand. Do not let the fact of a death by cancer scare you away. If cancer is a partner in your relationship you already know there are gifts from that player.

And Yglesias adds perspective and intensity of language, and he is a detective looking at what is love and what is marriage and what are cancer’s contributions.

This is also an important book in the Literature of Caregiving canon because we are presented with a male caregiver, and a story of rich, imperfect people. So, again, this is no saccharine made-for-TV-movie cancer story. It’s a book that any book club will debate late into the night and the couple will, long after the book is back on your shelf, feel like great friends you once knew and admired.

The imperfection of both husband and wife, patient and caregiver give this book extraordinary reach.

I’ll return in a few weeks with another entry for our new virtual book club: The Literature of Caregiving. I’d love to have your feedback and your suggestions too. Please share your thoughts here or email me anytime.

[You can see the first post for Literature of Caregiving --Marilynne Robinson's "Home" on this blog on Monday, December 8th.]