Caregiving and Memoir at SUNY Book Festival Next Week

We talk a lot about the Literature of Caregiving here. Caregivers need books about caregiving. Yes, we need the how-to books—absolutely. But we also need books by caregivers, and we especially need beautiful, well-written books by caregivers.

In Albany, next week, we have two of the most beautiful writers on caregiving coming to the SUNY Albany Book Festival—on Saturday September 14^th. In a day that includes more than a dozen keynotes and several dozen authors signing, we’ll have two featured writers whose stories might scare us—bad things happened--but who ultimately inspire and encourage us.

Allison Pataki will be here discussing her memoir, “Beauty in the Broken Places—a memoir of love, faith, and resilience.” When she was five-months pregnant, and they were heading off on their babymoon,  her 30-year old husband suffered a massive stroke. Pataki became caregiver to a newborn and an impaired husband. 

Presenting with Pataki will be Abigail Thomas, author of the memoir, “Three Dog Life”—the story of her stunningly disrupted marriage when her husband suffered a severe brain injury, and how she faced the terrible decisions that followed and how she made a different, and fulfilling life.

At their presentation (11:30am to 12:15) we’ll have a chance to hear about structuring memoir and structuring one’s life after such huge disruptions to relationships and careers, and how one makes art—these books are truly works of art--out of shock, pain and crisis.

For some of us caregiving comes on fast—as it happened for these women and writers—with a call, a fall, a break. For others, we move in more slowly into it —no less tragically—with dementia, cancers, neurological illnesses. But for all of us who are caregivers we face this disruption and the challenge to make new lives—and maybe art. And all of us can learn from these writers who let us see the pain, the grief and especially the joy that is there as well.

Join us in Albany next Saturday or get these books for yourself or for a friend.

The Dutiful Daughter's Guide to Caregiving

It’s true that we don’t laugh a lot as caregivers. That means we are extra grateful when someone makes us laugh in the midst of this challenging life. And it always turns out to be a fellow caregiver—often who went thru a horrendous time before us, and who has enough perspective on the caregiving scene to look back and find the humor. 

Judith Henry’s book has that. Her book is subtitled “A Practical Memoir” and it is that.

 It’s her own story, and from that experience of caring for two ill and aging parents she extracts practical and helpful info that benefit the rest of us. 

And we readers can trust her cause she tells the whole truth—the hard parts, the crazy parts, the “I’m losing my mind” parts and the loving parts. 

Here are a couple of chapter titles just to give you the flavor:

Chapter One: I’m OK and You’re Going to Be Ok

Chapter Ten: My Dad Was a Lousy Tipper

Chapter Fourteen: In My Father’s House There Are Many Boxes

Chapter Twenty: The Facts of Life (A different perspective)

Her chapters also include beautiful short essays on love and literature and learning about sex as a 13-year-old reading Lady Chatterley’s lover, so yes, crazy as it may seem “The Dutiful Daughter’s Guide to Caregiving could make a great gift for someone—all of us—of a certain age.

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: 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.

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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.

Caregiver Comedy with a Big Dose of Help

“The Dutiful Daughter’s Guide to Caregiving: a Practical Memoir.”

I was introduced to this new book just this week. As soon as it arrived I opened to a random page and started laughing. Now, as you know, we look far and wide for the chuckles in caregiving but this book has super powers: honest practical help in the complexities of caring for older adults—two aging parents—and a lot of laughter—which (writing truth here: humor often comes from telling the truth) lightens the load and reassures us that we are not alone in this crazy caregiver game.

So yes, Judith Henry has written a memoir and guide. One of my favorite chapters is called, “We Were Never the Waltons”. Doesn’t that just nail it on sibling relationships and caregiving?

You’ll laugh. You’ll recognize yourself—and others—in this book. And—this matters: it’s a small book so it will fit in your hospital visit carry-on bag, and because it has a cute as pie cover you can give this as a gift to friends who are heading down the caregiver path. You’ll be giving them actual wisdom without seeming preachy.

“The Dutiful Daughter’s Guide to Caregiving” by Judith Henry

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: "Home" by Marilynne Robinson

I have been a caregiver for more than 30 years, and for the past ten years I have been coaching family caregivers. A couple of years ago I created a class called “Caregiving 101” to reach family caregivers in community centers, faith communities, and in workplaces.

What I’ve learned is that one of the biggest supports for a caregiver is hearing about how other people cope in their caregiving. We can learn from the good and the bad, from the “Do” and the “Don’t”, examples of how other people approached, struggled and survived their caregiving role.

In caregiving classes and support groups we hear poignant stories directly from current caregivers. But there is another way to share in these caregiving stories and that is from reading literature.

In the midst of my own caregiving I found myself leaning into the experiences of poets, novelists and those who write literary nonfiction, (essays and memoir as opposed to self-help books). Today my caregiving bookshelves have an equal number of advice books and works of literature—all guides to me on the practices, methods, strategies, and emotions of caregiving.

A few years ago I began teaching a class—for caregivers and for writers—called “The Literature of Caregiving.” Today, here at “Love in the Time of Cancer,” I am starting a new series on the literature of caregiving. Once a month, or maybe more often, I’ll introduce a novel, story or poem that offers a perspective on caregiving.

I hope you’ll enjoy these voices and that they will be helpful to you.

In caregiving literature we are often talking about pain, suffering, grief, or family dynamics, which we all know, complicate the day-to-day stress of caregiving.  Some works of literature in the caregiving genre can also be classified also as works of “narrative theology”—where there are underlying questions of meaning,  “What does all this mean in a bigger sense?” and “What wisdom do these stories offer about how I should live my life?”

I’ve chosen Marilynne Robinson--one of America’s great modern authors to lead this new series. Her books land on the best-seller list with each publishing, and they have the wonderful dual quality of holding their own as great page-turning fiction as well as having deep, deeper and deepest layers should you want that kind of read as well.

Maybe you recall some of her books, which were published in this order:

“Housekeeping”—which was also a wonderful movie, then “Gilead”—which won the 2004 Pulitzer Prize, then “Home” in 2008 and most recently, “Lila”. All of Robinson’s stories are set in Iowa—where Robinson lives. And each of her books centers on the joys, sorrows and struggles of one or more family caregivers.

In “Home” (2008) Robinson gives us Glory Boughton, age 38, who has returned to Iowa to care for her dying father. Glory has her own struggles that her father isn’t aware of. Glory’s brother Jack—gone 20 years—arrives home as well but not to help out but rather because, as we slowly learn, Jack needs a lot of tender care as well. Critics have called Jack Boughton one of the “greatest characters in recent American literature.”

Robinson’s writing and story telling is extraordinary. She uses a kind of page-turning prose that can seem so simple until you realize pages later that she has delivered complicated relationships and even more complicated emotions to us so gracefully.

Glory and Jack’s father is a retired minister so there is a family language of faith that both Jack and Glory wrestle with as they wrestle with each other. While the theology belongs to their pastor father, Glory is being tested in every way: emotionally, financially, physically and theologically.

Robinson’s other books all have caregivers as lead characters: an eccentric aunt in “Housekeeping”, a husband and wife in “Gilead” and a surprising friend in 2014's “Lila”.

While these stories are serious and important Robinson’s skill is also in making them enticing page-turners, so even the most tired caregiver will enjoy keeping Robinson on the bedside table, or in the bag that goes to and from appointments. 

I’ll return in a few weeks with another entry into our new canon: The Literature of Caregiving. I’d love to have your feedback and your suggestions too. This can be our virtual book group or we’ll be caregiving friends sharing a great read.

Living in the Land of Limbo

Every year I teach a class called the Literature of Caregiving where we look at fiction and poetry and plays that touch on caregiving and cancer, and relationships that are changed by illness.

I’ve compiled a long list of books and it is fun to ask other readers what books –that are not self-help or advice—they like that have given then a picture of what it means to be a caregiver or what happens to a relationship when serious illness enters the story.

It has been said that there are only two stories: “A Stranger Comes to Town” or “A Man Goes on a Journey.” Think about it; think about your favorite movie or work of fiction. Then think about cancer: Yes, someone is going on a journey and yes, it’s also true that scary cancer has come to town.

Then consider Alzheimer’s: indeed a stranger comes to town. And for both cancer and Alzheimer’s and every other serious illness: the caregiver is going on a wild and hairy journey.

Now there is a new book that has collected stories of fiction that depict the difficulty of caring for a loved one with a serous illness.

This new anthology called “Living in the Land of Limbo.” The editor is Carol Levine, director of the United Hospital Fund’s Families and Healthcare Project. Levine has organized this anthology by type of relationship: children of aging parents, husbands and wives, parents and children, lovers and friends and even paid caregivers. She includes wonderful stories from Raymond Carver, Rick Moody, Lorrie Moore among other great writers.

This is a book for you the caregiver, you the patient, you the friend and yes, you the healthcare provider. All shame and euphemism are removed. Here illness and caregiving are as real as they can be because, of course, that is what fiction allows.

http://www.amazon.com/Living-Land-Limbo-Fiction-Caregiving/dp/0826519709/ref=sr_1_1?s=books&ie=UTF8&qid=1399149895&sr=1-1&keywords=living+in+limbo