Living in the Land of Limbo

This is not an impartial review. I’m a great admirer of Carol Levine’s work on family caregiving. Though we’ve never met in person, Carol has written seven terrific posts for Over 65. But despite my conflict of interest, I guarantee that if you read Living in the Land of Limbo: Fiction and Poetry about Family Caregiving, the book she compiled and edited, you’ll agree with me that it’s gripping and original!

The 35 stories and poems are organized into five sections based on the relationship of the caregiver to the person needing assistance: children of aging parents; husbands and wives; parents and sick children; relatives, lovers, and friends; and, paid caregivers.

The introduction tells readers the “story behind the stories.” An automobile accident left Carol’s husband Howard quadriplegic, and she tells us:

…in the seventeen years I cared for Howard at home, I found myself turning more and more to poetry and short fiction as a source of solace and a way to gain meaning from what sometimes seemed bereft of meaning…I found I learned more about myself and my situation from these unlikely sources than from the more conventional coping literature.”

Most of the readers of Over 65 have probably had at least some experience of caring for a family member, and know how complex and demanding it can be technically, logistically, and emotionally. I found every one of the stories and poems engaging. I’ll comment on three to give a bit of a sense of how the book affected me.

● As an only child who was responsible for helping his father navigate the end of his life, and as the father of two sons who aren’t far from the age I was at when my father began to decline, I read David Mason’s poem “Fathers and Sons” with a strong feeling of solidarity. The poet tries to get his father to sit down on the toilet, but his father insists on standing:

…I tried again
to bend him toward the seat,

And then I laughed
at the absurdity. Fathers and sons.
How he had wiped my bottom
half a century ago, and how
I would repay the favor
if he would only sit…

Unlike David Mason’s father, when my own father needed to have his bottom wiped he cooperated and seemed grateful. And when one of my sons, as a two year old, deposited an enormous bowel movement in his diaper on a flight from Amsterdam to Boston, I took him into the bathroom, stood him on the sink, and told him “I need your help to get you cleaned up.” He got the message, and stood stiller than a statue while I cleaned him. I hope I’ll be able to care for my own bottom until I depart from the earth, but we have a finite say in what cards will be dealt to us. If I’m not able to manage my own bottom, I hope my sons have access to David Mason’s poem, and will be able to laugh at absurdity just as the poet did.

● In Mary Gordon’s story “Mrs. Cassidy’s Last Year,” Mr. Cassidy feels bound by the promise he made to his wife long ago that he would let her die in her own bed. But now his wife has turned into a bad-acting, hate-laden monster.  Here’s how the story opens:

“Mr. Cassidy knew he couldn’t go to Communion. He had sinned against charity. He had wanted his wife dead.”

Mr. Cassidy would like to be able to laugh at absurdity the way the poet in “Fathers and Sons” does, but he can’t do it – his he’s too upset by his wife’s anger and violent behavior. She throws her food on the floor, spits out the medicine he tries to persuade her to take, curses him, and knocks him down, breaking his leg. His son and daughter-in-law urge him to put her “away.” They tell him “she’s not the woman she was. Not the woman we knew.” But to Mr. Cassidy “she’s the woman I married,” and he feels bound by his promise.

My late father-in-law made a similar promise to my late mother-in-law. Creating a home hospice environment before home hospice was a recognized practice took great effort on his part. Luckily, he was able to afford hiring additional help. Unlike Mrs. Cassidy, my mother-in-law appreciated what was being done for her and radiated love as her life waned.

We Americans like to think of all problems as solvable. But they’re not.  At the end of the story Mrs. Cassidy is wandering down the middle of the street outside the home while Mr. Cassidy, unable to move because of his broken leg, breaks the windows, trying to get someone to help her. The story takes us into questions about the limits of loyalty, and how much one individual should sacrifice for another.

● David Mason’s poem spoke to me as a father and son. Mary Gordon’s story spoke to me as a spouse. Lorrie Moore’s “People Like That Are the Only People Here” spoke to me as a physician. The narrator of the story is a mother, whose discovery of blood in her baby’s diaper leads to a cancer diagnosis, surgery, and for the moment, watchful follow up without chemotherapy. The narration combines gallows humor and unbearable personal pain. As in a medieval morality play the characters are defined by their role, not by name: the mother; the husband; the baby; the surgeon; and, more.

The story evoked memory of an incident from thirty years ago where I was inadvertently like the hurtful health professionals described by “the Mother.” I was walking around the medical facility I was in charge of and came upon a couple, obviously in distress. I stopped to talk with them and learned that “the Husband” had just received a diagnosis of Hodgkins Disease. Until the director of the facility (me) received a complaint about the cruel and insensitive person who had spoken with them, I’d felt that I’d “ministered” to them in a caring and compassionate manner. Those were my intentions, but if “the Wife” had been Lorrie Moore, I would have figured in the story as “the Doctor,” clueless and hurtful. I believe that in a videotape of my conversation with the couple my “performance” would have looked “good,” but I entirely missed perceiving how I was being experienced.

As I said above, I guarantee that the stories and poems Living in the Land of Limbo: Fiction and Poetry about Family Caregiving will have rich personal meaning to anyone who has been involved with or is otherwise interested in family caregiving.

Jim Sabin, M.D., 75, is an organizer of Over 65, a professor of population medicine and psychiatry at Harvard Medical School, and a Fellow of the Hastings Center.

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